May-June 2005 Volume 30, Number 3

National Newsletter of the Prader-Willi Syndrome Association (USA)

Gathered ViewThe

In this issue

Jenni continued on page 14

Our 30th Year of Publication

Aidan Dunn, New York

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PWSA (USA) MakesStrides in Research

Make Sure You AreCounted!

Let’s Love OurChildren by TakingControl

Conference Update

TV ProgramsDeliver TwoStrong Messages

Creating A MedicalInfo Notebook

Christian’s FamilyChristmas

Stomach & IntestinalProblems in PWS

Exercise Therapyon a New Tryke

A Super Teen

We Remember

Tough As NailsJenni Earns Her Varsity Letter in SwimmingBy Doug Noll

Jennifer Noll, who has PWS, with her varsity letter.With Jenni are her high school coach Kevin Beabout

and his wife Sarah Spindel Beabout,who was Jenni’s first swim coach.

Nearly 50 high school swimmers receivedtheir varsity letters March 8, 2005 at theRockville High School Swim and Dive Teamawards banquet in Rockville, Maryland. Thisculmination of a successful season ofcompetition is a greataccomplishment for anystudent, but it wasparticularly special formy daughter Jennifer,who has PWS, who alsoreceived her varsity letterfor participation on theteam.

As Jenni stepped upto the podium to receiveher letter from the coach,I reflected upon all shehad accomplished overthe past seven years.

Since Jenni’s PWSdiagnosis just before her3rd birthday, my wifeLinda and I have tried tokeep her active to helpmanage her weight. As apediatric physicaltherapist, Linda recognized the benefits ofswimming for increasing Jenni’s strength andendurance. Jenni learned to swim at age 6through formal lessons at our local pool.

As a former competitive swimmer, I tookon the challenge of helping her with strokemechanics. Jenni loved going to the pool, andenjoyed our one-on-one swim clinics. By age8, she was able to swim the length of a 25-meter pool. It wasn’t pretty, and it wasn’t fast,but she could make it across... largely aided bythe fact that she floated like a cork!

It was a Saturday morning in June of 1998that Jenni first joined the swim team at oursummer pool, Manor Woods Swim Club in

Rockville. Jenni was then 9 years old, and theteam was holding time trials. We thought thatteam participation would be good for Jenni,and she really wanted to try out for the team.While she was definitely able to swim the

length of a 25 meter pool, the 9- and 10-year-old freestyle event was 50 meters. Confidentthat she could finish, Jenni dove in (sort of).

She finished the first 25 meters well aftereveryone else had finished the 50 meters.With all eyes on Jenni, halfway through hersecond length, I was beginning to scan thepool deck for the lifeguard.

But Jenni was determined, and almost 2minutes and 30 seconds later, she finished the

2 The Gathered View May-June 2005

Chair - Carol Hearn, Plymouth, MNJanice Agarwal, Zionsville, INDonald Armento, Huntington Valley, PADaniel Driscoll, M.D., Gainesville, FLLisa Graziano, Redondo Beach, CAJohn Heybach, Chicago, IL

Stephen Leightman, Cherry Hill, NJCarolyn Loker, Kalamazoo, MIRobert Lutz, Bryn Mawr, PABarbara McManus, Buffalo, NYMark Ryan, Newhall, CAMary K. Ziccardi, Cleveland, OH

Scientific Advisory BoardChair- Merlin G. Butler, M.D., Ph.D., Children’s Mercy Hospital, Kansas City, MOChair Emeritus - Vanja Holm, M.D., University of Washington, Seattle, WASuzanne B. Cassidy, M.D., U.C.I. Medical Center, Orange, CAJoe Donnelly, Ed.D., University of Kansas, Lawrence, KSElisabeth M. Dykens, Ph.D., University of California, Los Angeles, CADavid Ledbetter, Ph.D., Emory University School of Medicine, Atlanta, GAPhillip D.K. Lee, M.D., UCLA School of Medicine, Los Angeles, CAHarriette Mogul, M.D., New York Medical Center, New York, NYSue Myers, M.D., St. Louis University, St., Louis, MORobert Nicholls, D. Phil., University of Pennsylvania, Philadelphia, PAAnn Scheimann, M.D., Johns Hopkins University, Baltimore, MDBarbara Y. Whitman, Ph.D., St. Louis University, St. Louis, MO

Clinical Advisory BoardChair - Daniel J. Driscoll, Ph.D,.M.D., Univ. of Florida Health Science Center, Gainesville, FLMoris Angulo, M.D., Winthrop University Hospital, Mineola, NYIvy Boyle, M.D., Bellefaire JCB, Cleveland, OHJames Boyle, M.D., St. Vincent’s Charity Hospital, Cleveland, OHAaron Carrel, M.D., University of Wisconsin Hospital, Madison, WIElisabeth M. Dykens, Ph.D., University of California, Los Angeles, CALinda Gourash, M.D., Pittsburgh, PALouise Greenswag., R.N., Ph.D., Iowa Child Health Speciality Clinics, University of Iowa, IABryan Hainline, M.D., Ph.D., Riley Children’s Hospital, Indiana University School of Medicine, INJeanne Hanchett, M.D., The Children’s Institute, Pittsburgh, PAKaren Levine, Ph.D., Spaulding Rehabilitation Hospital, Boston, MAJim Loker, M.D., Bronson Methodist Hospital, Kalamazoo, MIHelen McCune, M.S., R.D., Shands Hospital Food & Nutrition Service, Gainesville, FLBarbara Y. Whitman, Ph.D., St. Louis University, MOLiaison Members:Ken Smith, The Children’s Institute, Pittsburgh, PASuzanne Cassidy, M.D., Scientific Advisory Board, U.C.I. Medical Center, Orange, CAJanalee Heinemann, M.S.W., Executive Director, PWSA (USA), Sarasota, FL

Opinions expressed in The Gathered View arethose of the authors or editors and do not necessarilyreflect the views of the officers and board of directorsof PWSA (USA) unless so stated. Medical informa-tion published in The Gathered View should not beconsidered a substitute for individualized care by a

licensed medical professional.

PWSA (USA) Board of Directors

OFFICERSPresident, Carolyn Loker, Kalamazoo, MIVice-President, Ken Smith, Pittsburgh, PASecretary, Julie Doherty, Tallahassee, FL

Treasurer, Karen Goldberger, Davenport, IA

STAFF & VOLUNTEERS Janalee Heinemann, Executive Director

Diane Spencer, Support CoordinatorDavid Wyatt, Alterman Crisis Counselor

Steve Dudrow, Business ManagerAnn Coyne, Financial ManagerCindy Beles, Triage Advocate

Norma Rupe, Bereavement CoordinatorCarolyn Loker, Young Parent Mentoring

Vicki Knopf, Parent Mentoring IIJodi O’Sullivan, Community Development

NEWSLETTERJane Phelan, Editor

Lota Mitchell, Associate Editor

The Gathered View (ISSN 1077-9965) is publishedbimonthly by the Prader-Willi Syndrome Association

(USA) as a benefit of membership. Annual U.S.membership dues are: 30 Individual; $35 Family; $40Agencies/Professionals. Membership dues outside

the United States are $40 Individual, $45 Family and$50 Agencies/Professionals (US Funds). We never

deny parents membership for any reason.

Prader-Willi SyndromeAssociation (USA)

5700 Midnight Pass Road, Suite 6 . Sarasota, Florida 342421-800-926-4797 9 a.m. to 7 p.m. Eastern Time

Local telephone: 941-312-0400 . Fax 941-312-0142e-mail: national@pwsausa.org . web site: www.pwsausa.org

Members Only: Check our PWSA (USA) web site forSpecial Opportunities Limited to Members: www.pwsausa.org

User Name: members; Password this issue is COWBOYIf asked for Domain Name it is CIMCO

Through the teamwork of families andprofessionals, PWSA (USA) will improve andenhance the lives of everyone impacted with Prader-Willi syndrome (PWS) and related conditions.

Diane Arnoudse, MichiganShawn Cooper, GeorgiaBrooke Fuller, Michigan

Kate Kane, MarylandAndy Maurer, South CarolinaMargaret Miller, Pennsylvania

Mike Nacht, OhioAbbott Philson, Maine

Adults with PWS Advisory Board

Our Mission:

Deadline to submit items for upcoming issues of The Gathered ViewJan/Feb: Dec 1; Mar/Apr: Feb 1; May/Jun: Apr 1;Jul/Aug: Jun 1; Sep/Oct: Aug 1; Nov/Dec: Oct 1

May-June 2005 The Gathered View 3

By Janalee Heinemann, Executive DirectorPWSA(USA): Making Exciting Strides in Research

Thanks to a tremendous amount of volunteer time fromour energized Research Committee, the expertise of ourscientists in PWS on our Scientific and Clinical AdvisoryBoards, our database guru Barb McManus, the fundingefforts of our Development Committee, and you, our mem-bers, we’ve been able to put more funding and emphasis onresearch. Our large membership base and years of practicalexperience help complement the direction and implementa-tion of research. Highlighted below are three phases of ourcurrent quest to unravel the complex puzzle of PWS.

Where We Are – And Where We Are Going PWSA(USA) offers a total of up to $300,000 of grantassistance for scientific researchers with an interest inimproving the lives of those with PWS. Projects of up to$50,000 per year for two years aimed at discovering anddeveloping treatments, cures, and technologies benefitingthose with PWS will be competitively awarded. While PWSA(USA) is open to insightful grants regard-ing PWS, we have identified health issues we believe areespecially meritorious for research focus. Grant requests inany research field (e.g. genetics, neurology, endrocrinology,pulmonology) that provide insights into therapies will receivethe highest priority:Obesity: This is the number one threat to the life expectancyand life quality for those with PWS. The effort to controlobesity and the resulting medical consequences of obesity,combined with the stress these issues bring to families, makehyperphagia a life-long threat. Projects leading to therapies/actions to reduce hyperphagia and/or obesity are a fundingpriority.Respiratory: Due to life-long hypotonia and the complica-tions of obesity, people with PWS are at risk for pulmonaryissues, including sleep apnea, health risks from upper respi-ratory infections, and aspiration. Projects that could lead totherapies or action to reduce the threat of respiratory issuesin PWS will be the priority for funding.Gastrointestinal: Recent sudden deaths due to gastrointes-tinal events highlight the significance of gaining greaterunderstanding of gastrointestinal processes and risks forthose with PWS. Studies to develop therapies or action toreduce risks of gastrointestinal issues are a funding priority.

Our Years of Progress

Influencing Government Funding Support researchers by actively advocating in DC forNIH funding and other government funding to go to PWSresearch.

Bringing Scientists Together for Research Sponsoring a two-day fall meeting for experts in researchon hyperphagia (uncontrollable appetite) to share currentknowledge and identify and plan for future research. Sponsor an Annual Scientific Conference — the onlyPWS specific conference in the U.S. — which bringstogether top researchers and physicians in the field of PWSto share knowledge and brainstorm needed research. Daily work with our two medical/research boards tocollaborate on medical and research issues.

Supporting Researchers Sharing research and medical information on PWS atmedical conferences, on the web, and in the newsletter . Announcing research projects and encouragingparticipation. Writing letters of support for appropriate PWS research.

• Genetics – diagnosis & genes identified 1981 — Deletion in long arm of chromosome 15 identified as cause of many PWS cases. 1983 — Deletion origin determined as from the father’s contribution to the chromosome pair. 1989 — Maternal uniparental disomy (UPS) identified, meaning both of the 15th chromosome pair are from the mother. • Imprinting/epigenetics — PWS as model for thisimportant area • Mouse models • Brain – hypothalamus • Treatments – growth hormone – FDA approval in 2000 • Psychiatric meds such as SSRIs • Earlier diagnosis and treatments = increased quality oflife – over 600 families are part of the PWSA (USA) NewParent Mentoring Program. • Parent support groups (1975 USA; 1980s UK) • Collaborative Research Groups — Rare DiseaseClinical Research Network and European Union groups • IPWSO (1990) = World-wide support — 60 countriesare now members • Education, awareness (of families & physicians) • Communication (e-mail, Internet, etc.) • PWS as important genetic model to understand obesityand appetite regulation

Funding Valuable Research Projects

Current research being funded • Dec. 2003 — Dr. Jean-Pierre Chanoine, Effect ofSomatostatin on Ghrelin Concentrations, Food SeekingBehavior and Weight in Patients with PWS • Sept. 2004 — Elisabeth M. Dykens, Ph.D., The Useof Psychotropic Medications in PWS • Dec. 2004 — Dr. David A. Stevenson, Causes ofDeath in PWS • Mar. 2005 —Dr. Daniel J. Driscoll, Ph.D., Dr. AnthonyGoldstone, Ph.D. et al., Functional Magnetic ResonanceImaging of Reduced Satiety in PWS and Obesity

4 The Gathered View May-June 2005

Make Sure You Are Counted:Help Us Complete Our PWS Database!

PWSA(USA) currently has the largest databasecollection of information on children with Prader-Willisyndrome, but some of it needs updating and all data onfamilies lacks essential information that could be crucial toimprove the medical care of our children.

Board Member Barbara McManus is helping to improveour database by increasing the size and accuracy of theinformation. You can find the form on our web site atwww.pwsausa.org/population/ or e-mail us atnational@pwsausa.org, or call the national office,1-800-926-4797 and ask to have a form sent to you. Everyone who completes a form will receive a copy ofour new Medical Alert booklet, which is essential for doctorand emergency room visits. In a perfect world, PWSA(USA) would have the namesand pertinent information needed for everyone with thesyndrome. There is power in numbers! If we can acquire a more comprehensive database,National Institutes of Health (NIH) and other fundingsources will be more willing to help our children throughfunding continued research in PWS and obesity. You don’tneed to be a member of PWSA(USA) to be included in thisdata collection.

Board member and PWSA(USA) WebmasterBarbara McManus wants to hear from YOU

You can help us help you, your family and all those whohave been touched by Prader-Willi syndrome just bycompleting a form and becoming part of our nationaldatabase. Please act now!

PWSA (USA) Database: Information Update to April 2005Total respondents to date: 1,141 Please note that when viewing percentages, 30% ofrespondents had children under age 5. In a futureedition of The Gathered View, we will break down thestatistics into different age categories, which willchange the percentages. We will also add informationto the Members Only section of the web site and sharemore information in future Gathered View editions.

Major Medical Concerns – Current or Past

64% Weight related39% Sleep apnea 9% Aspiration 19% Other respiratory complications 8% Heart problems10% Osteoporosis34% Curvature of the spine (scoliosis, kyphosis)14% Fractures 7% Hip dysplasia 7% Other bone problems45% High pain tolerance33% Severe skin picking

1% Mitochondrial disorder 10% Seizure 13% Autistic behavior 9% Diabetes 9% Hypothyroidism 15% Pubic or axillary hair before age 8 16% Hormone replacement therapy (e.g., estrogen/ testosterone) 4% Gall bladder disease 0 Pancreatitis 11% Gastric/intestinal disorders

54% At some time have received or are receiving Growth Hormone

No. Ages339 0 to 5216 6 to 12160 13 to 19383 20 to 59

Demographics51% Female49% Male 3 sets of identical twins (both have PWS)19 sets of fraternal twins (one has PWS)

At Birth<1% Twins – identical 2% Twins - fraternal 3% Assisted reproductive

techniques25% Breech22% Premature27% Emergency c-section52% Tube feeding

Type of PWS41% Paternal Deletion21% Maternal Uniparental Disomy

(UPD) 2% Imprinting defect 2% PWS Like 2% Translocation31% Unknown

IMPORTANT NOTE: Because of the potential of future journalpublications, we request that this information NOT be reprintedwithout express written permission from PWSA(USA). We aresharing this information as a courtesy to our members, and tothose who participated in the PWSA(USA) survey.

May-June 2005 The Gathered View 5

Let’s Love Our Children By Taking Control

President’s View

Carolyn LokerDear Families,

Yes, I certainly understand why you as parents had a rangeof emotions while watching the 20/20 segment about PWS. Ijust watched this again, and cried for our children, and even hadgoose bumps when Dr. Dan Driscoll was talking about ourchildren and stated, “We think we’re going to get major clues byunderstanding Prader-Willi syndrome, which is one reason forobesity that gives us a window of opportunity to go in and helpto understand other causes of obesity, and, eventually, to figureout what’s broken and then how to fix it.”

And also the commentator stating, “Today, kids born withPrader-Willi can get off to a better start. They can be diagnosedvirtually at birth and start hormone therapy to assist in theirdevelopment. Driscoll is studying the brains of kids withPrader-Willi. He thinks research into how Prader-Willisyndrome triggers this condition, what body chemicals areinvolved and how they interact could yield benefits foreveryone who struggles with their weight.”

Yes, it is sad that our children have PWS, and we do notknow what the future holds for them. But if you can see in yourheart to celebrate, let’s do. Let’s celebrate getting an earlydiagnosis; let’s celebrate early intervention; let’s celebrate thislist of wonderful parents willing to help each other; let’scelebrate that we have the PWSA (USA) organization willing tohelp spread awareness, educate, counsel and research for a cure.Let’s celebrate that PWSA (USA) has wonderful researchers onour boards who dearly love our children and want to find thatcure for them.

So what must we do as parents? Do we let our children takecontrol, or is it our place as parents to take control, to guidethem, to keep them healthy even if it means saying “No.”

Saying no is loving them! Keeping their weight in anappropriate range, even if we have to lock, is loving them.Keeping their tantrums at bay is loving them. If we don’t do thisnow, at their young age, then behaviors will be formed, and itwill be much more difficult to change.

Recently I have heard of so many of our children age 3 to 9years old who are morbidly obese. What is really distressing isthat these are parents who have received an early diagnosis. It’stime to set appropriate external controls for our children inevery aspect: at home, school or wherever they are. Do trust thatour children want that; they will love you for it because it showsthat you care. This takes our children’s anxieties away, if we asparents have those systems set in place.

I’ll share our story about Anna. I guess you can say I’m oneof those “older” parents now. Our sweet Anna is 10 years oldand was diagnosed at 17 months of age. Many of you areprobably saying, “Wow, that was late!” CELEBRATE YOUREARLY DIAGNOSIS!

For us, 10 years ago, that was early! But it didn’tchange anything; she was already getting earlyintervention, and back then, growth hormone was notrecognized by the FDA, but that didn’t stop us. Shestarted GH as soon as she had a stimulation test to provethat she was indeed GH-deficient and after we won ourappeal with our insurance company. CELEBRATEBEING ABLE TO START GH EARLY AND NOTHAVING TO GO THROUGH THE APPEAL PROCESSAND A DAUNTING STIMULATION TEST! Soon afterstarting GH, Anna sprouted like a weed and nowmeasures a fraction under 5 feet!

As soon as the diagnosis was made, we knew we hadto be vigilant with counting calories (although her weightwas okay at the time), and I can proudly say that Anna istall and looks slim, weighing in at 78 lbs. So at almost 5feet tall and 78 lbs. puts her at the 85th percentile forheight and the 50th percentile for weight. And to top thatoff, she is a very sweet and happy girl. WE ARECELEBRATING THAT!

Dr. Jim and Carolyn Lokerwith their daughter Anna, age 10, who has PWS

Love continued on page 15

6 The Gathered View May-June 2005

27th PWSA(USA) National ConferenceJuly 27 – July 29, 2005

Sheraton World Resort, Orlando, FLwww.pwsausa.org click on Conferences/Events

Round ‘Em Up And Get Ready ToHead On Over To Conference!

With our annual PWSA (USA) National Conference fast approaching, we’re expecting a greatturnout! It includes a Scientific, Provider and Chapter President/Affiliate Day on July 27th followed by theGeneral Conference and Youth Programs on July 28th and 29th.

General Conference includes several sessions of interest to all attendeesRespiratory & Apnea IssuesGI Issues: Perforation & Stomach NecrosisLife Enrichment TrustsThe Latest in Research and an Overview of the Scientific Session presentations

• Age-appropriate Sharing Groups and Grandparent Program

Special breakout sessions feature topics specifically geared toward the issues and achievements ofAdult, Youth (school-age), and Children age 0–5. Topics include:

Adult SessionsUncomplicated PWS: Cognitive & Behavioral Characteristics, Essential EnvironmentalComponentsComplicated PWS: Medical Complications, Psychiatric, Complications & Crisis InterventionPLAN: Planned Lifetime Assistance ProgramSuccessful Vocational ProgrammingComponents of a Quality Residential Program

Youth SessionsIns and Out of IDEA and IEPs; IEP Questions & AnswersBehavioral IssuesPsychiatric & Medication IssuesThe Pragmatics of Speech & Language

Children Age 0–5 SessionsOverview — What every parent should knowSensory IntegrationSpeech and Language GuidesIDEA and IEPs

Conference concludes Friday night with the annual Gala Banquet, which this year has acountry-and-western theme, and includes a live performance of the song

“Brand New Me” by the recording group Hometown News.

Don’t miss these important deadlines: Registration deadline is June 30, 2005. A $25 per-person latefee applies AFTER June 30. No YAP/YIP Registrations will be accepted after June 30. No registrationscan be accepted after July 18th.

Log on to the PWSA (USA) website and download your forms or register online TODAY!

Make your room reservations NOW!

Call Globetrotter Travel, 1-800-322-7032or e-mail topwsa-usa@globetrottermgmt.comor online towww.globetrottermgmt.com/pwsa-usa

May-June 2005 The Gathered View 7

Chapter ViewChapter activities are popping up like spring daffodils.

Annual Walk-a-Thons are planned for Southern CaliforniaMay 1 and for Northern California May 21. In AprilWisconsin sponsored its annual Hobby, Social & TrainingDay, offering opportunities for siblings, children and adultswith PWS to try out a new hobby or expand on an old one.Pennsylvania plans its sixth Annual Golf Outing in May.Florida prepared for its annual overnight Spring Conferencein April.

PWS Families of Ohio held its Annual dinner, danceand auction in March. Total funds raised came to $18,000!These funds will be used for a donation to National, Nationalconference grants for Ohio families, PW Families functionsand other organizational needs, as well as a donation of$1,500 to the International PWS Organization IPWSO.

In New York in March the Winthrop PediatricDepartment and the Metropolitan Support Group with Dr.Moris Angulo and his staff combined to present aSymposium for parents, siblings and caregivers on practicalstrategies for everyday challenges and new advances in

PWS. Presenters included well recognized physicians,Janalee Heinemann, executive director of PWSA(USA), andthe Hon. Daniel D. Angiolillo, president of the New Yorkchapter.

The New York State Developmental DisabilitiesPlanning Council (DDPC) awarded the Research Foundationof the Office of Mental Retardation and DevelopmentalDisabilities (OMRDD) up to $140,000 for the first year of atwo-year project to develop a comprehensive approach to theidentification, assessment of needs, interventionmethodologies and training for individuals with PWS, theirfamilies, professionals and other caregivers. Funding for yeartwo, approximately $160,000, will be contingent uponsuccessful completion of year one activities. The New Yorkchapter has been and will continue to be integrally involvedwith the implementation of this grant, with parents, siblings,medical and other professionals being asked to serve on thetask forces and Advisory Board.

Congratulations, New York! Wouldn’t it be wonderful ifsomething like this could be done in all states?!

— Lota Mitchell, Associate Editor

PWS in the NewsTelevision Programs Deliver Two Strong MessagesBy Lota Mitchell, Associate Editor

With not one but two television programs aired on majornetworks about the syndrome, PWS got a great bigawareness boost in April!

“It’s Not My Fault I’m Fat,” filmed by the BBC (BritishBroadcasting Company), aired four times on the DiscoveryChannel. The show followed two British males, Craig, 13,and Chris, 22, and an American girl who went to theChildren’s Institute in Pittsburgh, Leona, 13. All weredangerously overweight. With considerable sensitivity, theconcluding message pointed out how very difficult it is towalk in their shoes.

Although he weighed more than 400 pounds, Chriswanted so badly to be independent. Some of the Britishviewing audience reacted with anger that he was not forcedto accept intervention, literally to save his life; thus socialservices stepped in and did a mandatory placement. Then,following the negative press that led to his being forced intoplacement, there was reverse public pressure, and Chris waslet out on his own again. The issue of respect for autonomyversus need for care is a thorny one and not limited to GreatBritain.

Certainly tears were shed by some who watched theprogram. Others wished it could have been more informative,including showing some of the strengths of people with PWSand their successes, rather than having the entire focus onappetite, obesity and behavior. But, as one personcommented, “I personally felt the story was good. It was notso much about PWS but about the struggle with theirhunger.”

The 20/20 segment, “Rare Disorder Causes EndlessHunger,” featured Maribel Rivera, 24, from California, andKate Kane, 23, from Maryland, along with an interview withDr. Dan Driscoll, who is on the PWSA(USA) Board ofDirectors and also chairs our Clinical Advisory Board. Hestated, “We think we’re going to get major clues byunderstanding Prader-Willi syndrome, which is one reasonfor obesity, that gives us a window of opportunity to go inand help to understand other causes of obesity and,eventually, to figure out what’s broken and then how to fixit.”

PWSA(USA) President Carolyn Loker said, “Millionsof people now know or have heard, maybe for the first timein their lives, the term Prader-Willi syndrome. Just the factthey mentioned that PWS could hold the key to the obesity

Kate Kane ofTowson, Md.,

who has PWS,was

interviewed forthe TV program

“20/20”

News continued on page 15

8 The Gathered View May-June 2005

Suggestions for Creating A Medical Information NotebookBy Vicki Knopf

As the parent of a child with PWS, most of you haveprobably encountered medical professionals who have neverheard of Prader-Willi syndrome and you have had to explainthe syndrome and how it impacts your child.

Several years ago after having to give a dissertation onPWS at midnight to an ER doctor who had never heard ofPWS before, I decided to put together a medical notebookfor each of my three kids who have PWS. It has proved to bean indispensable tool many times.

Often during an emergency it can be difficult toremember important information such as medical conditionsand medications. For us, the medical notebook hasaccompanied ambulance personnel twice duringemergencies, and each time we have gotten tons of praisefrom the EMTs for providing the information they needed toprovide the proper care to our child.

Things you will need to get started: • A vinyl covered loose leaf notebook. I bought mine at an

office supply store for $1.99 • Some computer paper • Clear page covers • All your contact information • Prescription information

On the outside FRONT COVER of the notebook, write:MEDICAL INFORMATION FOR: (your child’s name).Medical Alert Brochure: A Diagnostic and Reference Guidefor Physicians and Other Health Professionals.

Inside the notebook cover, write: If found, contact (addyour name and contact information).

PAGE 1 should contain the following: • Your child’s full name • Birth date • Address • Phone number • Both parents’ full names • Emergency numbers, cell phone, pagers, etc • Primary care provider information • Insurance information (make sure to include the name ofthe person who carries the insurance and their employer)

PAGE 2 should start with the sentence “(insert yourchild’s name) has PRADER-WILLI SYNDROME.”

Then explain any other medical conditions and allergiesyour child has, and ALL medications, the doses and time ofday given. Don’t forget to list any supplements and GrowthHormone, too. • List any and all surgeries; year and reason for the

surgery • List any past broken bones or other significant injuries • Explain any history of seizures, even febrile seizures • List any hospitalizations, including date and reason.

PAGE 3 AND PAGE 4 should contain the MedicalAlert Brochure: A Diagnostic and Reference Guide forPhysicians and Other Health Professionals, which isavailable through PWSA(USA). I use two brochures,displaying one side on page 3 and the other side on page 4.PWSA(USA) recommends also including the new MedicalAlert booklet, essential for doctor and ER visits.

PAGE 5 should list all specialists your child sees, alongwith their phone numbers.

The notebooks I use also have a pocket on the inside andback covers. I keep several copies of the Medical AlertBrochure available to hand out to any professionals we see. Ialso keep several sheets of notebook paper in the back for meto write down notes.

It is extremely important that you keep the notebookcurrent!

Remember to check it often and change any medicationsas dosages and medications change and add any medicalinformation as needed. I have my sheets typed out as MSWord Documents so that I can update them in my computerwhen information changes.

It is also essential to keep the notebook in an easilyaccessible location so that you can grab it at a moment’snotice should it be needed.

Remember, this book is about your child, so customizeit with any other personal information you feel is importantto know in the event of an emergency.

I hope you won’t ever need this book, but if you do,you will be prepared to answer questions that could saveprecious time and make a huge difference in the medicalcare your child receives.

Vicki and her husband David Knopf have sevenchildren, including three children with PWS, two of themadopted. They live in Salem, Connecticut. Vicki heads theParent Mentoring II program and serves on thePublications Committee.

The Chuckle CornerIn the Beginning...

I was talking to Alex, my 12-year-old withPWS, about the changes he will be encountering ashe is going thru puberty. We talked about his voicechanging and his “Adam’s apple” becoming moreprominent. He turned to me and touched my neck and said,

“Mom, this is your Eve’s apple!”Mary Lynn Larson

Appleton, Wisconsin

Do you have a joke or funny story toshare? Please send it to the PWSA(USA)office. Be sure to include your name,telephone and address in case we havequestions.

May-June 2005 The Gathered View 9

You Never Know What You Can Do Till You TryLast year Christine and Jeff Bevacqua of Tinton Falls,

N.J. hosted a dinner and dance for friends and family inhonor of their nephew Jack Martin Bevacqua, age 3, who hasPWS, shown above with his parents Christie and Kevin.Christine and Jeff collected gifts and raffle items, and werehoping for 100 guests and maybe $3,000. They raised$12,000! This year, they’re trying again. They plan to hire aband instead of a DJ, find even more great raffle prizes andget all of the food donated to offset expenses. Who knowshow much they’ll raise this time!

FYI: Some Conference ExpensesMay Be Tax-Deductible

Internal Revenue Service, Publication 502, Medicaland Dental Expenses, which explains the medical anddental expenses that may be claimed on Schedule A, states“You can include in medical expenses amounts paid foradmission and transportation to a medical conference if themedical conference concerns the chronic illness of yourself,your spouse, or your dependent. The costs of the medicalconference must be primarily for and necessary to themedical care of you, your spouse, or your dependent. Themajority of the time spent at the conference must be spentattending sessions on medical information.

Caution The cost of meals and lodging while attendingthe conference is not deductible as a medical expense.”

• Admission would be the part of the registration fee forthe sessions only. That information will be available at theConference.• It is your responsibility to keep all receipts, including thewritten information on the Conference topics and descriptionof the content of the sessions.• If you have other questions, please contact your personaltax advisor.

— Kay Goldberger, PWSA(USA) Treasurer

Hello, my name is Christian Coats and Ihave Prader-Willi syndrome. I’m only 17months old so I don’t know much aboutPWS, but what I do know is how much myfamily loves and cares for me.

Just before Christmas my 12-year-oldcousin Kaylie found a donation card forPWS. Nana explained to her that funds wereneeded to help people with PWS.

Kaylie decided that she wanted to help,so she typed up a description of me andPWS and passed out flyers in her neighbor-hood, asking people to please leave out anybottle returnables that they had. She spentthe next week collecting all the bottles. Hermom and dad matched what she collectedand then my other cousins — Kendall, 8,Guy, 12 and Shaina, 19 — also gave theirown Christmas money. Then they spent thenight before Christmas calling familymembers to donate also. They had raised $600 to donate toPWSA(USA) in my honor and presented this donation to me,my mom, dad and brother Kyle on Christmas! My cousinswere all so excited that they could of cared less about theirown Christmas gifts.

It was the best Christmas our family has had, and as youcould imagine, a lot of tears were shed. We are all so proudof our family. With love, faith and support like that, I can

Christian’s Family ChristmasL-R: Shaina, brother Kyle, Rhiannon,

Guy, Kendall, Ryan, and Kaylie. Christian, who has PWS, is the cutie pie in the middle.

conquer Prader-Willi. Special thanks to all my donators:cousins Kaylie, Guy, Kendall, Shaina, Ryan and Rhiannon;Nana, Mimi and Papa; aunts and uncles, Mike, Karrie, Lori,Guy, Lori and Jimmy; great-grandparents and Bonnie, Don,Ed and Sandy.

Love, ChristianKelly and Steve Coats live with their son Christian in

South Lyon, Michigan.

View From the Home Front

10 The Gathered View May-June 2005

Medical News

Stomach and Intestinal Problems in People with PWS: SomeBy Barb Dorn, R.N., B.S.N.

We continue to learn more abouthealth issues and Prader-Willisyndrome (PWS). Over the past fewyears, we have gained a greaterunderstanding of various stomach andintestinal problems that appear to besomewhat more common in personswith PWS. We now know thatsymptoms of stomach distention or

bloating can possibly be related to acondition called gastric dilatation, alife- threatening condition. We may bebeginning to have answers to otherstomach and intestinal concerns;however, at the same time, thisknowledge is opening the door to morequestions. It is our hope that we willgain a better understanding of theseproblems today so we can prevent themfrom ever occurring in children andadults with PWS tomorrow.

Gastroparesis, Gastric Dilatation/Necrosis and PWS — What Do WeKnow?

PWSA (USA) receives calls fromaround the country about people withPWS who are experiencing acutegastrointestinal problems. More andmore children are being diagnosed witha problem called GASTROPARESIS(weakness of the stomach). Thiscondition occurs when there is a delayor slowing in the contraction of thestomach. Because of this delay,stomach contents build up andabdominal distention can occur.

The stomach is a muscle thatcontracts very much like our heartmuscle. Unlike the heart, instead ofpushing blood, the stomach pushesfood out of its cavity into our intestinefor further digestion. Feeling full is ourbody’s mechanism for regulating the

My son Tony, now 20, who has PWS, has been experiencing problems with abdominal pain, constipation andhemorrhoids. Recently I have communicated with several other parents who have shared their stories about stomach andintestinal problems in their children. I was amazed to hear how common these problems are. It is important for us to getmore definitive answers and solutions for these gastrointestinal concerns.

amount of food that the stomach canaccommodate. When a person overeats, the stomach stretches. It maybecome “over stretched” or distended.We know that people with PWS do nothave the normal mechanism ofregistering fullness as they eat. Theyare at a very high risk of overdistending their stomachs.

It is believed that if a person withPWS greatly distends his/her stomach,it can stretch to the point that it cuts offits blood supply, thus causing necrosis(the stomach tissue dies). This can be alife-threatening condition if it is notquickly diagnosed and treated. Overthe past few years, it has beendiscovered that many people with PWShave developed ACUTE IDIOPATHICGASTRIC DILATATION WITHGASTRIC NECROSIS. Unfortunately,most of these cases have beendiagnosed in a postmortemexamination.

Acute = Sudden onset/severe Idiopathic = Exact cause unknown Gastric = StomachDilatation = expand, stretch, open Necrosis = Death of tissue (stomach)

It has been found that people with PWSwho have suffered from acuteidiopathic gastric dilatation with gastricnecrosis have had this occur shortlyafter a binge episode. It is notsurprising to learn that persons withPWS who already have generalized lowmuscle tone may have poor muscle tonein internal muscles of their bodies.

The usual symptoms seen ingastroparesis include abdominaldistention or bloating,abdominal pain, heartburn,

vomiting and regurgitation of stomachfluid into the mouth. These symptomscan be very difficult to detect in peoplewith PWS. It is urgent that any signs ofacute abdominal illness be evaluated bya health care professional.

If a person with PWS isexperiencing gastrointestinal symptomsand problems, he/she may be referredto a specialist called agastroenterologist (a doctor whospecializes in disorders of the stomachand intestine), who will conduct tests todetermine the cause of these problems.Optimally, gastroparesis is diagnosedthrough a gastric or stomach-emptyingtest. Food that has been “marked” isgiven to the patient. A scanner then

Those with PWS may be at higher risk for having gastroparesis.Some risk factors seen in both conditions summarized below.

Risk factors for Gastroparesis • Diabetes – most common cause • Adrenal and thyroid gland problems • Certain drugs weaken the stomach – many antidepressants and heart medications • Neurologic or brain disorders such as Parkinson’s, stroke and brain injury

Risk Factors Seen in PWS• Diabetes• Many with PWS have been found to have low functioning of the thyroid gland.• Many with PWS take antidepressant medications as part of behavior management and some may be taking heart medications.• We continue to learn the effects of PWS on brain functioning.

May-June 2005 The Gathered View 11

e Answers... Many Questions

tracks the time it takes for food to leavethe stomach.

Another test that may be performedis an electrogastrogram (EGG). This isa test similar to the EKG test done onthe heart. The EGG measures theelectrical waves that normally sweepover the stomach with each contraction.In gastroparesis, these electrical wavesare slower than normal.

If caught early, gastroparesis canbe treated. If there is an underlyingmedical condition, it needs to betreated. Diet and nutrition must also beadjusted. Since fats delay stomachemptying, foods high in fats should beavoided. High-fiber food also stays inthe stomach for a long time. Such foodsmay need to be restricted ifgastroparesis is severe. Liquids leavethe stomach faster, so they areencouraged. It is also been found thateating frequent small feedings 4-6times a day may be helpful. In manycases, medications may be used to helpstimulate the stomach to contract andempty more normally.

It is important to follow the adviceand recommendations of the health careprofessional and/or dietician who ismost knowledgeable of that person’scondition and needs.

QUESTIONS: Is gastroparesis acommon finding in children and adultswith PWS? What should be done todiagnose and treat this condition? Arethere any persons with PWS who seemto be at higher risk?

Many parents and caregivers also report that children or adults with PWSexperience rumination (the regurgitation of undigested food from the stomachback up to the mouth). For so long, it was believed to be a behavioral issue.Could this problem be related to gastroparesis? Do we need to change ourapproach in its management? Is this problem a sign of gastroparesis?

Constipation – Could this Be aProblem for People with PWS?

Over the past year, PWSA(USA)has received an increased number ofreports of constipation in children andadults with PWS. In many cases, thisproblem has been discovered byaccident. Oftentimes, a large amount ofstool has been noted in their intestineswhile having a x-ray or test done that isnot specifically looking for thisproblem.

So far, no research studies havebeen done to suggest or confirm ifthose with PWS might be at higher risk.Intestines, like the stomach, aremuscular organs which push contentsforward so that nutrients are brokendown, absorbed and/or eliminated aspart of the digestive process.

Constipation can be defined asinfrequent passage of hard, dry stoolsor difficulty in evacuating stools.Ideally, a person should have a bowelmovement every day or so, and itshould be soft and bulky. There can beseveral causes for constipation. Someof the more common causes aresummarized in the box below.

Common Causes for Constipation• Lazy colon that does not contractproperly and move the stool throughthe intestine (a “hypotonic” colon)• Thyroid deficiency• Low potassium level• Certain medications such asmedications used to manage mood/behavior, pain, diuretics (water pills)• Spastic colon• Tumors or advanced diverticulosis• Abuse of laxatives• Disruption in normal routine – oftenseen when a person travels

The longer stool remains in thecolon, the greater the chance of itbecoming hard and dry. As stool travelsthrough the intestine, more and morewater is absorbed, resulting in firmer,harder stool. When a person does nothave adequate water intake, theproblem can get worse. Water and otherfluids help to keep the stool moisterand prevent this.

If a person has a “lazy colon,” itmay be contracting, however it may notbe contracting strong enough to provide

the person with adequate elimination ofstool. In these situations, a person maybe having a BM every day and stillhave a large quantity of stool remainingin the colon. This build-up can alsocause over-distension of the colon. Itcan cause pressure — both forward(toward the rectum) as well asbackward (toward the stomach). Therehas been a question as to whether thisbuild up of pressure in the colon maybe adding to the problems in acuteidiopathic gastric dilation and necrosis.Many people who have suffered withthis condition have also reported aproblem with constipation.

The primary way constipation isdiagnosed is by listening to a person’shistory and complaints. For manypeople with PWS, that reporting isoften sketchy and incomplete. In theearly years, parents may be assistingwith toileting hygiene issues and seetheir child’s stool. As they grow olderand more independent, this is not thecase.

If a problem is suspected, thehealth care professional may perform aphysical exam along with additionaldiagnostic testing. Blood testing may bedone to rule out a thyroid or potassiumdeficiency. A barium x-ray may beperformed. This is an x-ray using acontrast solution (barium) that isinstilled with an enema into the lowerintestine. Other tests such as asigmoidoscopy or colonoscopy may beindicated. In both cases, a flexiblelighted instrument is inserted into therectum in order to view the intestine.The sigmoidoscopy allows the healthcare provider to view the rectum andlower descending colon. Thecolonoscopy is a more extensive test inwhich all of the large intestine can beviewed. If polyps (blood-filled growths

Stomach continued on page 12

12 The Gathered View May-June 2005

Stomach Problems - continued from page 11

Guidelines for Treating Constipation• Eat regularly (not usually a problem for persons withPWS).• Drink plenty of water and fluids daily (often difficult forpersons with PWS).• Encourage regular walking and/or exercise.• Use a bathroom when the urge to have a BM occurs. Ifneeded, set aside 15 minutes after a meal to sit on thetoilet.• Eat a diet of high fiber, fruits and vegetables (fresh isoften better).• Use laxatives and/or enemas as recommended by yourhealth care provider. There are different kinds of laxativesthat work on the intestine in different ways. Your providercan assist you in choosing the correct one. Overuse oflaxatives can cause the colon to become dependent uponthem.

that can often develop into cancer) arefound, they can be removed andbiopsied. Growths may be one of themore serious causative factors that needto be ruled out.

Treatment of constipation isdependent upon its cause. Onceserious problems are eliminated, simplemeasures can be used.

QUESTIONS: Are people with PWSat higher risk for constipation? Do theyhave a tendency to have a “lazy colon”?Are they effectively and adequatelyemptying the colon? Can people withPWS prevent issues with constipation?If yes, what appears to be the mosteffective form a treatment? Doesconstipation predispose thedevelopment of acute idiopathic gastricdilatation with necrosis?

Hemorrhoids and Anal Fissures – AnExplanation for Rectal Irritation andPicking?

Hemorrhoids are a commonnagging disorder. They are dilated(enlarged) veins that occur in andaround the anus and rectum. They maybe internal (inside the rectal canal) orexternal (outside). They can causesome uncomfortable sensations andproblems, including itching, irritation,bleeding and pain. If the hemorrhoidsare external, they can often be seen as

small protrusions from the anus. If theyare internal, they may not be seen, anda person may not be aware they havethem. Conditions that can contribute tothe development of hemorrhoids arepoor bowel habits, constipation,diarrhea, obesity, pregnancy andstraining during a bowel movement.

Anal fissures are small tears in thelining of the anus. They can result from

a dry hard bowelmovement thatcauses this tissue tobreak. They arealso seen when aperson experiencesbouts of diarrheaor irritation. Afissure can be quitepainful during andfollowing a bowelmovement.Bleeding anditching may also beassociated withthese. They canbecome infected sothat an abscess orulceration maydevelop. In thesecases, fever,

drainage and swelling may also bepresent.

Diagnosis of any rectal problems isprimarily done by examination by ahealth care provider. Because of thepresence of bleeding, further studiesmay be done to make sure other moreserious conditions (colitis, Crohn’sdisease, polyps, and tumors) are ruledout.

Many of these problems resolvewith no treatment. However,symptomatic treatment is often helpfulin minimizing the discomfort associatedwith these problems. Stool softenershelp to reduce the pain in passing thestool. Medicated creams and/or padsmay decrease pain and itching. A sitzbath (soaking the buttocks in warmwater) helps to relieve discomfort andpromote healing. Medications such asantibiotics and/or suppositories may beprescribed. The health care professionalmay need to surgically open up anabscess to promote drainage and relieve

pain. The itching, pain and irritation ofhemorrhoids and other rectal problemscan be very bothersome. In addition tothis discomfort, the problem can becompounded if a person is alsoexperiencing rectal pressure oftenassociated with severe constipation.

QUESTIONS: Do people with PWShave a tendency to have problems withhemorrhoids, anal fissures or otherrectal problems? Is the start of rectalpicking a result of persons with PWSexperiencing these sensations and/orproblems? Could this problem beprevented or decreased by payingcloser attention to bowel habits,hemorrhoids, anal fissures and/or otherrectal conditions?

Questions and Answers — Where DoWe Go from Here?

We are just beginning to learn andquestion how the gastrointestinalsystem works in persons with PWS. Weare also starting to gain knowledgeabout some of the health concerns thatare also being diagnosed. We don’thave all the answers. What we do knowis that we need to take a closer look atstomach and intestinal problems inpeople with PWS. We must learn whatcan be done to prevent serious healthproblems from occurring. We mustproceed by encouraging and supportingmore research. We must do everythingto nurture the search for more answers.

Barb Dorn is an RN at theUniversity of Wisconsin Hospital andClinics, past president PWSA(USA),past president and program directorPWSA of WI, Inc. She lives in Verona,Wisconsin with husband Don and sonsTyler and Tony, who has PWS.

May-June 2005 The Gathered View 13

Tressa Enjoys Exercise Therapy With New TrykeBy Mary Pringle Tressa now looksforward to working out,thanks to the delight ofriding her new AmTryke®.It has allowed her toexperience the pleasure ofriding freely among peerswithout disabilities, and Ihave seen improved motorskills and strengthdevelopment.

So what is anAmTryke? It’s thetrademarked name for atherapeutic tricycle forchildren with disabilities.Rotating handle bars areattached to same chaindrive as the foot pedals,allowing rider’s arms andlegs to propel the tryke, and results in a total body workout.Straps secure the feet to the pedals, while torso and lapsafety belts maintain the rider in the seat. A wide wheel baseand narrow turning radius provide stability. It’s fun forTressa to use, which helps her body to gain strength, balanceand tone.

Tressa received the Toddler modelAmTryke, a therapeutic tricycle suitable forchildren about 1 to 4 years old. There are othersizes to meet the needs of all our kids. Suchtrykes are fitted through a licensed physicaltherapist. You can apply for a tryke through yourlocal chapter of AMBUCS™, an organizationdedicated to creating mobility and independencefor people with disabilities. A bicycle companynow manufactures them, and to date almost5,000 tyrkes have been distributed.

Tressa was one of the first to receive thetoddler style when it was released in late 2004.Contact your local chapter to get fitted for yourtryke. Sometimes the AmTryke can be providedto children with disabilities at little or no charge.Go to http://www.ambucs.com/AamtrykeDemoSites.shtml and click on yourstate to find your representative. Or callAmTryke Coordinator Pam Burleson, National

AMBUCS, Inc., 3315 North Main St., High Point, NorthCarolina 27265; phone: 336-869-2166, Fax: 336-887-8451.

Mary and Clarence Pringle are the parents of Tressa,3,who has PWS. They live in Cape Coral, Florida. ThePringles have adopted six children with disabilities.

Tressa Pringle, who has PWS, riding her tryke

Managing Conflicts of Interest in ResearchBy Janalee Heinemann, Executive Director

Since two recent research grants involve members of ourmedical boards, AND since following all ethics of non-profitstandards is important to us at PWSA (USA), these are themethods we use to avoid and/or manage conflict of interest.

1) When a board member or close affiliate is involvedwith a grant or funding request, that person is excluded fromall conversation, advocacy, and vote on the topic.

2) Those reviewing the grant are asked to evaluate andassure not only that the grant request is appropriate, but thatthe funding request is equal to or less than what would beappropriate or found elsewhere to assure a fair transaction.

3) Our three boards (governing, scientific, and clinicaladvisory – 38 members in total) are large enough and diverseenough to help avoid the type of favoritism observed on somevery small boards.

4) We have a clear conflict-of-interest policy.5) We have an attorney on our governing board and are

members of a program (MAP) that allows us open access toconsulting with an attorney who is a non-profit specialist.

6) We follow the guidelines of the National Center forNonprofit Boards and other respected monitoring agencies.

7) We maintain open disclosure on our actions andtransactions.

8) We have records to show that the action makesorganizational sense.

To exclude some of the best PWS researchers and talentfrom our boards would limit the quality of the work and theresearch we support. To exclude any possibility of a grant tothese committed and talented people would penalize them forthe volunteer work they commit to PWSA (USA). None ofthe non-profit ethics regulations or recommendations statethat no grants or funding should ever be awarded to those ona non-profit organization’s board. Instead they recommendmanaging the potential for conflict of interest by setting andfollowing appropriate guidelines.

We have worked very hard at doing so over the years. Infact, some board members have been declined grants follow-ing peer review, because some of the most zealous scrutinyhas come from fellow board members.

PWSA(USA) has a 167-page Policy and ProcedureManual which took us years to establish, and which we arecontinually building upon. We review and refer to itconstantly to assure our members, our donors, the govern-ment, and ourselves that we are following all requirementsestablished by agencies that monitor non-profit organizations.

Also note that we have membership in the Better Busi-ness Bureau and the Combined Federal Campaign, and areregistered to raise funds in every state. We spend hundreds ofhours to assure that every dollar given is used appropriately toenhance the lives of our children. — Janalee Heinemann

14 The Gathered View May-June 2005

Jenni - continued from page 1

race, crying, to a standing ovation from the entire team andall the parents present. We knew right then and there that wehad found a supportive, caring group of families andcoaches.

Jenni continued her involvement with Manor WoodsSwim Team for the next six summers. The team practicedfive days a week for 1 hour over each eight-week summerseason.

The exercise she received was tremendous, helping herto manage the weight that inevitably increased over thewinters. She also benefited from the social involvement onthe team, and from the sense of accomplishment she receivedas she improved her times. It never bothered her that shefinished last in almost every “B” level race that she swam in.

We rewarded her with a dollar for every race in whichshe improved her time (and still do), which she promptlyspent at the pool snack bar. But these were well-deservedtreats. The team has a “buddy system” where older teammembers are paired with younger swimmers to help developcomradeship and a sense of team inclusion. Jenni benefitedfrom this, both as a “little buddy” when she joined the team,and later as a “big buddy” to younger team members. At theend of each summer season, she received a participationtrophy and participation ribbons that were added incentives.

At age 12, Jenni started on growth hormone therapy. Asshe grew, her muscle-mass and strength increased. Thishelped her to continue to improve in her swimming and togain the endurance required to swim longer races. She

learned to swim all four strokes, and continued to gainconfidence. At the end of last summer, we couldn’t imaginethat Jenni would be able to swim the 100-yard eventsrequired of high school swimmers. But she has been able todo so, and will continue with these events in the 15- to 18-year-old age group this summer.

Since that Saturday in 1998, Jenni has continuedworking on her swimming, out of the spotlight, steadilyimproving at her own pace and working very hard inpractice. Her participation on the high school team thiswinter has been much the same as in the summer, with thecommunity of coaches, parents and swimmers equallysupportive and inclusive. Even though she is the slowestswimmer on the team, Jenni fulfilled all of the participationrequirements to receive her varsity letter.

In addition to her letter, she also received the “TeamSpirit” award for her encouragement and support of herteammates at the swim meets.

And while all of this made us very proud of her, perhapsthe most special award she received was last summer whenshe was given the “Tough As Nails” Coaches Award for herwork ethic in practice and her team spirit.

But isn’t that a fitting description for each of our kidswith PWS? They each are “Tough As Nails.” We just need tohave the love, patience and vision to help them achieve theirbest. Doug and Linda Noll live with their daughter Jenni inRockville, Md.

Looking for The Next Super Teen

An article about April Boughton recently appeared in theThe Next Step magazine. This magazine is targeted to teensand their life after high school… college, careers and life ingeneral. Many of the teens in the Super Teens section havebeen nominated by the parents, teachers, counselors andfriends. They are all involved in an amazing number ofactivities and do their best at everything they do. April is oneof these winning super teens, and she appeared on theCOVER of the March/April 2005 issue.

April is a 15-year-old freshman at Clay High School inSouth Bend, Indiana. She is the youngest of six children, andshe has also had 13 foster siblings during the last five years.This experience has inspired her to become a future fosterparent.

April has volunteered at St Joseph Regional MedicalCenter for a year, where she works on a floor that servespeople with long-term needs. “In my volunteer work, I makea list of what other volunteers should do when they work,”April says. “This is based on my experience with the patientsand nursing staff.”

She is involved in sign language club, Reins of Lifehorseback riding, has participated in the basketball and iceskating competitions at Special Olympics and is an altarserver and Eucharistic minter at her church.

Nowhere in the magazine article was it mentioned thatApril also has Prader-Willi syndrome.

Do you know someone you would like to nominate forthe March cover next year? You can apply tonextSTEPmag.com/SuperTeens. Maybe we will see you nextyear as our New Super Teen!

— Diane Spencer, Support Coordinator

Super Teen April Boughton (L), who has PWS,with her sister Emily

View From the Home Front

May-June 2005 The Gathered View 15

Love - continued from page 5

How do we make this all work? Structure and routinewith her eating schedule, three nutritious meals and twosnacks a day given at the same time every day withabsolutely nothing in between those times except CrystalLight and Trident gum.

Anna has accepted this. Of course, she tells me she ishungry in between those times, and of course it breaks myheart to tell her it’s not time to eat yet, but I love her and Iknow it has to be this way!

What about behavior? I see when we are not calm, notpatient or something is out of routine that her anxiety willincrease, although not to the point of tantrums. So it’s up toour family to pre-plan and explain to Anna what and whensomething is going to happen. It is our job as parents not toallow irrational behavior to take over control.

If you have read down to this point, bless your heart.Please know that there are very successful stories amongst“the older generation,” but it takes diligence. And we in the“older” generation are here to help you. To share with you,during my writing this story, my sweet Anna handed me acarefully hand-crafted note that reads “I LUV YOU MOM”!

Hugs to all.

Sibling ViewCalling All Siblings: Help Others By Sharing Your ExperiencesBy Lota Mitchell, Associate Editor Calling all who have or have had a brother or sister withPWS! Everyone from 8 to 80 — you are needed! Eventhough you may not recognize the importance of yourexperiences and views, you have lots to share. You knowmore than anyone else what it is like to grow up with asibling who has Prader-Willi syndrome. As we learn morefrom you, maybe suggestions and ideas will emerge abouthow to help others having the same experiences and feelings.There are two ways for you to share your knowledge andexperience.

The first is a survey with some questions for you toanswer. You can get the survey by going online towww.pwsausa.org/sibling.asp, filling it out and with a clicksubmitting it right there. For all who are computer andInternet savvy, this is the way to go. Or if that won’t workfor you, call the national office, 1-800-926-4797, and a copywill be mailed to you. Finally, with a little procrastinationand a trip to the national conference this summer in Orlando,you can pick up a copy there to fill in and return.

This will not take a lot of your time, doesn’t have agrade, and definitely isn’t very hard. In fact, you might evenenjoy doing it. What more could you ask than that?

The second is to write a piece about your brother orsister with PWS. It could be about your relationship with thatperson, perhaps something special about them, maybe yourfrustrations and even anger about the situation. The nationaloffice will collect all these writings and put them togetherinto a booklet that others can read. You can mail it to thenational office or email it to ssurvey@pwsausa.org.

The deadline for both the survey and a contribution tothe sibling booklet is September 30, 2005. So you don’t evenhave to hurry to get it done — but a warning: it’s so easy toprocrastinate! Please, please, do the survey and also consideralso writing something for the sibling booklet.

[Important note: This survey is strictly for siblings andnot to be confused with the survey to update the database.The two are entirely different.]

We welcome writings for The Sibling View:good experiences, bad experiences, we want tohear what you think. They can be signed oranonymous, whichever you prefer. Send themto the attention of Lota Mitchell at the PWSA(USA) national office, or e-mail to her atljecholsm@juno.com.

problem in the general population was a big WOW! Thegovernment has millions of dollars that can be allocated forthe obesity issues in the US. This will give us more dollarsfor research, WOW! More diagnoses will be made becauseof this program and with our numbers increasing, this willbring about more people, more voices willing to help in ourcause.”

Indeed, Support Coordinator Diane Spencer reports,“…the [national] office has received countless calls andemails… from people who have a child they now suspectmay have the syndrome, or they know of someone who mayhave the syndrome…. We at the national PWSA office aregrateful for the exposure and the opportunity to reach out tohelp these people. Also, we are deeply grateful to thefamilies that participated in the presentation.”

An e-group member commented, “This story coming outon national television has to be one of the best things that hashappened to PWS. People need to be aware of the effects ofthe syndrome. PWS parents struggle every day not only tokeep our kids healthy when they are at home but also whenthey are away from home and even in school. I hear all thetime how the school systems are not listening to the parentsand are not doing what is right for our kids. We need moreshows like this to educate people, including the educatorsthemselves!”

Yes, many thanks to the families, to Dr. Driscoll, toExecutive Director Janalee Heinemann, who worked withboth producers, to ABC, and to the BBC. For those who areinterested, we will show both the BBC show in its entirety(no commercials!) and the 20/20 broadcast at this summer’snational conference in Orlando.

News - continued from page 7

16 The Gathered View May-June 2005

We Remember... Every person has something special to offer this world — and we, along with their families,want to share who they were and what they meant to the people who loved them.

We Remember Jeremy – And We Thank the Girards Jeremy Girard was a high school junior when he passedaway on Dec 26, 2004 due to gastric necrosis and a stomachrupture. His biggest goal in life was to be just like everyoneelse and be able to do what everyone else did. Although withPWS he could not always do this, he tried to the best of hisability. It was never important to Jeremy how well he didsomething, only that he accomplished his goal.

He loved music, so he joined the chorus and sang hisbest. He wanted to have all regular classes in school. Heworked hard to accomplish this goal and had a B average. He loved cards, board games and puzzles. He wascontinually working on one or the other of them. He was alsoa great YU-GI-OH card player.

Jeremy was well known for his huge smile and gooddisposition. We have learned that Jeremy touched more livesfor the better than we could ever have imagined. Jeremyalways accepted everyone as they were and was kind toeveryone.

Jeremy is greatly missed by all.After the tragic death of their 17-yer-old son, Pete and

Gayle Girard looked for ways to honor Jeremy by helpingothers dealing with Prader-Willi syndrome. They gavePWSA(USA) a huge lift to support our critical officeautomation capabilities with a new file server. Not only didthe Girards purchase this for us, but Pete made a special tripto our Sarasota office to install it.

This new computer resource will provide us thenecessary disk storage and processing power to support the

— Janalee Heinemann

Contributions In Memory OfAndrew HillTwins Building Company, Inc.UAW-GM Center for Human ResourcesRoger & Dorothy BarnettPatricia FrantomNorwood and Suzette JewellRobin & Matthew RaibleJudy ClausMargaret & Ronald VogrinGail DaumJune PeoplesTommy DingleyBill & Judy CastleLinda & Mark RyanDavid Scott Mitchell (son)Lota & Dave MitchellJulie DudrowSteve & Gwen DudrowJodi & Ryan O’SullivanJohn FitzmauriceEdward O’LearyJeremy GirardNATCA-ORL LocalJerry Yakubchik

George WarrenPhyllis and Paul ForemanAndrea & Bob WarrenAnne HagenLillian FladmarkTim & Carol HearnJonathan Ross DavisMollie StinsonMorty KapeDr. James & Jacqueline BasselCard in name of Patricia BrasgoldKramer Family MotherEleanor & Richard WeinerClyde MaysGreg & Alice TalleyJanet Wallace MooreThe Lord’s Diciples MinistriesMelissa J. KellerOrville & Betty LaurendineJames & Shirley StinnettLois E. WilloughbyBob & Melinda McKenna

From funding through a grant by CIBC WorldMarkets Miracle Day, we have been able to shiphundreds of free medicalvideos to 16 states and tothe following 17 countriesthat have requestedthem. Thanks to funding,more children around theworld will get a diagnosisand treatment. From CIBC’s generosity,lives will be saved.

Denmark * Japan * Philippines * FranceHolland * Spain * Sweden * UK * MoroccoGermany * Australia * Greece * PortugalBelgium * Peru * Argentina * Venezuela

Thanks CIBCWorld Markets Miracle Day

You Made A World Of Difference!

Jeremy Girard

ever-increasing PWSpopulation for the nextfew years. They havealso donated MedicalAlert booklets to theFlorida State Chapter todistribute to all of theFlorida families. TheGirards feel strongly thatEVERY family shouldhave one of our MedicalAlert booklets. If anyonecannot afford a booklet,call the PWSA(USA)office and the Girards will cover the cost.

Jeremy’s twin sister Amanda and her friend plan tovolunteer at our youth program at conference this summer.

We sincerely thank the Girards for their compassionatehearts. Through their gifts of kindness, I am reminded of apoem by Edmund Burke: “The true way to mourn the dead isto take care of the living… keep on with your work and bringjoy to others.”

May-June 2005 The Gathered View 17

Angel Fund

Our Goal was $100,000.We’re over the top, andYOU MADE IT HAPPEN!

Gabriel ($1,000 and above)Michelle & Tommy Torbert/Torbert Produce, Inc.Joseph & Rosemarie SchreierPaul & Amy WissmannDiane & Paul SchaafWilliam & Tina Capraro, Jr.James & Suzanne FullerR. B. GallowayRobert D. HarrisonClinton & Karla HurdleDavid K. & Linda KaugherJoseph M. MurrayMichael & Donna PappagalloJohn & Carolyn RodmanDavid R. Wise Center Co. Chapter of Thrivent Financial for LuthernsAllan & Frannie ZaleskyPrader-Willi California FoundationUnited Way of Sarasota County, IncPWSA of New JerseyMichele & Stephen LeightmanMark Greenberg & Robin FleischmannE-FundsWilliam & Jennifer Stewart

Heavenly Angel ($500 - $999)Preferred Financial Group, Inc.Jean & Douglas LoweJohn & Bonnie KraftWayne F. & Barbara MillerGeorge & Shannon BaughmanSusan P. BrowneRobert & Barbara ChristensonMitchell & Francine CohenRose & Stephen CrawfordMary J. CulverKelly & Kevin DelongchampLouise & Clinton HurdleRobert F. LebowJames Bicknell & Mary Ann Lockhart, Jr.Robert LorenziniC.P. McElheney IIIRick & Susan MocciaChris & Christy O’Gara/Integrity Management SystemsClarance & Reba OlsonCarlos & Marilyn PajonChuck RanbergTimothy Paul RussellRaymond E. ShirkPeter & Alice TenbeauTommy & Peggy TorbertJames D. & Wava Van BecelaereFrancis H. WilliamsHalifax Linen Service, Inc.McElheney-Building FundR.C. Hunt ElectricGreater Twin Cities United WayRobin & Ellery SedgwickFieldstone FoundationJ.D. & Elise HansardDavid & Michelle CampbellCamperships for Retarded ChildrenDavid & Janice Agarwal

Arch Angel ($250- $499)Terri & Bill MarksDennis & Toni HawthornRussell & Catherine MullisAndrew & Chris AppelPhil & Becky GullingBarbara & William KerriganSue & Ronald McNeilFinis & Loretta StaffordJames A. TrentacostaBill & Jean McCallAvadh AgarwalAnthony H. AbbottSid & Ellen AbmaA.J. AgarwalTina & Stanley BaronJoAnne Riley BarronStephanie M BittleJon & Tasha GrahamRoger HealyDaniel & Linda Jannette,Sr.Arthur & Barbara LouvSondra MaynardRobert MuirheadMichael & Lisa O’LearyJames & Susan RaglandLarry & Jan RosenfieldRichard Ruzicka, JrDenise & Jeffrey ServaisDavid & Jane ShoemakerEleanore StuartJoe Willis & Suzanne TateEdward & Andrea Wachter, Jr.Trimont Engineering Co.Wood RealtyIBM Employee Service CenterPaul & Robin BarrettLea & Joel AxelrodGerald & Karen Kolschowsky

Gerry & Margot LawrencePeter HupperichGoddard School - ChalfontDuane & Caroline CoykendallCheryl Travelstead

Angel ($100- $249)Herbert & Frances DavisWilliam & Eileen Klein, Jr.Joanne BladelJimmy BrienGladys FahertyStephen & Sandra GinnMartha & Gary GirdaukasThomas & Christine HauserDavid & Sharon HowardGeorge & Nancy MullenSandefur SchmidtDavid & Amy SteinbarthJohn Wright Stanley Thomas & Assoc.Michael & Pamela ZoloTimothy & Laura LloydLesley BaschTodd & Mary BorndaleJune & Eamonn FinnertyJohn & Mary HalterLois Jean & James G. KaneSaundra & Fred LevanTerry & Debbie MleczewskiBernard & Millie O’ConnorKathleen & Ralph PaigeMargaret & Bob ParkerJanis A. RaberHelen & Frank McCarneyBrenda BuddPatrick & Filippa CaseyAnnie & Ned DurellPamela EisenArvind F. PatelSarah S. AbellWilliam & Jeane AllanJudy & Dan AlsnauerJackie AndersonAnonymousLori & Robert ArbuckleTim & Dawn AtwoodPat Bacon-BrandtDavid & Ann BairdRobert & Peggy BakerKathryn & John BalthropCoye and Kathleen BartonRichard BaskerBonnie Bates Stepping OutRichard J. BeaupreWilliam BeechelerNancy BellemanDelfin J. Beltran, M.D.Thomas & Darlene BenoitRobert & Fern BitzerDavid & Shelia BogartCatherine BoutonJames & Ivy BoyleMary & Holger BrachtRosa L. BrignerMichael BrindisiWanda BuccheriMarvin & Lorraine Buhai

Lougene & Dave BurleighBeverly & Harvey BushMerlin & Ranae ButlerSusan ButtsJean ByersCatherine CareyVictor & Nancy CarrascoRichard & Barbara CarterWilliam & Judy CastleHymen & Ruth ChausowSally & Chet CollomAllan CornnellJames & Bronda CurtisJohn B. & Mary Ann DaneseTom & Thelma DavidsonJames & Christa DavisGene & Fausta DeterlingDavid & Sharon DohertyWilliam & Gloria DohertyDouglas & Barbara DsidaCharles EcholsChristina & Jeffrey EricksonDaonne EschbachMichael & Susan EvansDebbie & Michael FabioSteven FaivreIrwin Gabriel FiedlerJim & Monika FolmerLawrence & Deborah FreundlichMaryanne & Edmund FunaiDiane & Chad GarofaloNorman GerouJerome & Carol GloeklerJim & Joni GormanLisa & TJ GrazianoLouise GreenswagAmanda & Jeff HackNorma J. HammondJeanne M. HanchettLee & Jack HancockMike & Linda HartnettJo & Floyd HatcherRandel &Trudy HermansPaul & Mary HillRichard & Patricia HillWillie HinsonDonald & Lelley HobdayJohn HomerAlberta HopperRobert E. HuffmanThomas & Agnes HughesAnn Murphy HuntBetty HydukeJames JonesJames A. & Susan F. JudgeMadonna & Roger KassElaine & Stanley KatzSean & Patricia KeatingElizabeth Sue KeenJeffrey KellettAbert & Linda KennethDavid & Tammy KenneyKevin A. & Julia KipkaWilliam & Jean Klein, Sr.Les KlynYale J. & Marita KrollJudith & Luis KubichekJohn & Pat LaBella

$104,957

18 The Gathered View May-June 2005

Willie & Mildred LacyMary L. LaganaJohn LarmerBonnie & Steve LazarCatherine LeonardR. Robert & Joann LepperIra & Renee LevineLois LewisTim & Carol LindseyJennifer & Dennis LindseyCyr & Anne LinonisGeorge & Ruth LockwoodHoward K. & Martha LondonStuart M. LouieTerri & Bill MarksCatherine MasiDiane MastersonStewart & Priscilla MaurerPatrice & Charles McClearyWillian and Lorraine McClellanBernice & James McKeanKimberly McKennaWendy Wolf & Mitchel MenzerJohn & Karen MeslowEugene & Jean Alice MetzgerSusan & David MillerBetty & Vern MockCarole A. MonroeJared & Stacy MontegutPatricia Mook & FamilyGeorge C. Mulry Jr.J. Brian & Gail R. MurphyRobert NeemsTina & Steven NowellMary O’GaraThomas and Judith O’KeefeOtis & Audrey O’NealCarolyn & Ralph PaigeLloyd & Alice ParcellWilliam & Winifred PaulsenMarlene PearmanDeborah and Patrick PeckPatricia PelszynskiHarry & Muriel PersanisMel & Chris PfeifferJane PhelanDawn PorchTodd Porter UCHSCMarlene R. PrattoFred & Barbara PrinceRenata & Lino QueiroloKatherine D. RadazWilliam & Barbara RanieriOty ReedNorman and Sandra Rich FamilyBetty RichmondT. Courtney RobertsHulen & Christa RodriguezLarry & Jan RosenfieldSusan E. Roubal, DOLinda & Mark RyanNatalie SaathoffLyle & Rita SchertzJanet M. & M. Keith SchumanSusan ScoppettaKelly ScottGary & Sharon Seedorf

Lon SeidlitzOksana & Ihor ShapowalenkoDoreen & Mitch SiasRebecca & Matthew SmithCarole & Joseph SmithDavid and Irene SmithEugene P. SmithBernard StarrJohn & Laurie StellaAnny StoeckWendy & Steven StokesJoseph & Mary StortoDonald L. SudenR Deutscher & C. SweeneyJean TillJanice C. TrillaLinda TullPowell & Joane UnderwoodRochelle & Steve VanceBilly & Shannon VitroAnna VockelGloria WaltersEleanor & Richard WeinerJohn & Nancy WeingartCharles WelchRoger & Ronda WestKarl & Denise WestenfieldMarilou WettDoug & Tina WhittenburgJean & Chuck WilloughbyElwood & Mary Jane WissmannMadeleine & Bob WojciechowskiBarbara WolfMelissa WoodKaren J. & Earle B. WoodRobert & Daylene WoodLynne ZarrinWEBCO GraphicsRoanoke Valley Auto WorksCompanion Animal ClinicBank of AmericaMary & Robert HillJohn and Virginia Manning, Jr.Douglas & Diana YakolaCitibank USA, N. A.United Way of Brevard CountyWayne AltonRich & Malea BonkRosemarie & Dewey ClarkRonald & Ethel HirshonPaul MoreschiRobert & Tanya SeldenCherub (Up to $99)Rose DanoviLenora R. WatsonAndrew & Chris AppelEllen & John AndolsekErnest & Alice MarekLota & Dave MitchellJacques & Pauline ParentLinda RollingsRon & Helga SchwarzHenry & Susanne SingerGary & Carolyn WeaklyAetna FoundationCarol L. NormanSarof and Vijay PargaonkarJane Abbott

Charles & Gladys AllredCatherine & Rudy AlvarezLorraine & Robert ArbuckleDonald & Ann ArmentoAnnette BaudoRobert & Rebecca BaummerNancy L. BenigniGregory & Karen BesticAlfred & Marie BevacquaDella Ann BinderThomas & Pamela BinghamJohn & Marilyn BintzC Michael & Linda Lee BlairAllan & Kathleen BoucherNorma BrecherJane Stickley BreenMiriam BreneisenMichelle & Robert BrittenhamRichard & Jane BrustkernMargaret Bruynell & Bobbie JarvisNancy & Stephen BurlingameRobert & Lorene CalesJeanne CarteauxJulie & Dan CaseyNancy ChemidlinBernice CohenPatricia DiColaFrank & Cecilia DiMarzioDaniel & Joan DixonJeanne & James DonovanDonald & Barbara DornWilliam & Rhonda EarleMarc, Lisa, Christopher and TJ FelizziRosemary FenderEulalia FerrerTara FirenzeJeane Hill FirthBernice & Peter FleischmannJohn A. & Dolores Forster, Jr.Angela FrancavillaThomas E. FreemanRobert FunkMarsha GamelinAlan and Maxine GellerBill & Sue GilmoreEric S. Goldschmidt - Goldschmidt & AssociatesHarriet & Bob GordonRobert & Linda GribbleFlorence GunnisonJeffrey & Mary HarbrechtArnold & Tricia HearnCharles & Barbara HeidelLowell & Jan HeinemannHarold & Tammy HopkinsJim & Linda HuckelberryDavid IngallsJoseph IversenJacqueline & Thomas JacksonMark & Jennifer JenkinsNannette & Jeffrey JohnsonDavid & Sandra JohnsonSteven & Roberta KenneyOrysia & David KillionWilliam KirchhoffKen & Maria KnoxJohn & Susan Lachance

Kyle & Tonja LassiterJames & Susan LazarusDebbie and David LevyFred & Patsy Lipp, Jr.Sandra ListDonna LuciaJames M. MansonTheodosia MantasStephanie MarkotaGerald and Mary MaurerHilda McLaughlinJoseph McManusSharon M. MilarRegina R. MurphyMichael & Kay NeffLois OlsonDavid & Maureen PagnuccoJerri PateMargaret & Mike Patterson- LedonneJere & Betty PerryDavid & Elizabeth PhillipsFrank & Gloria RangitschJohn & Carol RappMary H. RayGreg & Louisa RitterMichael & Shannon RouletteDennis & Sharon SaacksCynthia SajidMary L. SchneiderCharlotte S. SchwartzWilliam & Julie SeigerLaverne SidloDonna SiegelFrancois Gaultier & Rachel SilverAngel & Gregg SimsSandra SingletonRichard & Darlene SmithPaul & June SmithBernard StarrTammi & Gary SteinbergFrank & Jane StoryKathy Stroup & FamilyLisa V. TannerAnna TomasicchioCarol & Marc TrimbleChristina & Michael TurcolaBonnie VenturaDaniel and Joanne WalkerDarla YocumLinda A. ZickGraft, Inc. Marketing ServicesRichard & Barbara ChaseTracey and Emily SpragueJune VarcoeNorman A. BarkeleyMarjorie & Michael BeachCindy BelesAlonzo & Barbara BurdineRobert & Lisa RanieriHoward & Patty RosenthalChas. and Ellen AlpaughTimothy & Cheryl BreneisenMayme DueckerDonald and Karen GabelKiera HartnettWilliam and Rosemarie HepworthCarolyn Hutchens

Angel ($100- $249)

May-June 2005 The Gathered View 19

Angel ($100- $249)Janis & Robert LoperKathleen MinorSamuel & Patrice ScheckBeatrice SturmKenny VetorHelen AdamsCarla BaileyFrank & Gloria BakerSararose BeechnerKen & Betty BehnkenJames & Kelly BerryArlene & Bartlett BowlesMary B. BoyumSuzanne Brice & FamilyAnthony & Rita BrindisiMary L. BuchananSusan and John BurnsCraig and Sandie CarpenterNorman & Joanne ChenierPatricia & David CohenCharles & Virginia ConnorsMichael & Reisa CorbinJoseph & Susan CortelliniRene & Janet DaminLisa DeanStanton DeitchSalvatore C. Del SestoRay & Kathryn DoddsElsie and Donald DornJames & Judith DorseyLawrence & Dorothy DoyleByron & Sharon EagerJune EgrinJerry & Suzanne FawbushFrances Fisher-GoldmanHeinrich and Anna-Maria FroehlichAurilla FuscoRay GarverAllan GemmellTommie and Connie GilesRoger & Tracy GoatcherPaul & Roda GuentherLinda HartiganAnne R. HartleyKaren & Tom HaugHarry G. HedbergMarilyn & Ralph HeimMaria HenningsenByron & Betty HopkinsTim & Karen HopkinsSue HoyCharles & Barbara JohnsonLinda & John KaniaCyril & Zora KurtzChester and Theresa LabusAnna LeightmanPam LewisGeorgia LileyChad & Betsy LindseyLawrence & Bernice LondonC. W. LonnquistRaymond S. MarchantVictor & Vivian MarcoviciMartha McDonaldKevin & Samantha McGuireJean & Rod McLaneCalman M. Menzer

Natalie MilanaJohn and Jean MookIleen MorrisRita & Bill NeedelThomas & Shirlee NystromErnesto J. RamosJay & Linda ReinhardtSandra and Joseph RigsbyMary Rose RomagnanoMichael RuossMaryann and Herbert RuttVirginia SkeltonElizabeth & Kevin SlimakJohn & Pam StockingKathryn B. SwensonStanley & Tracy Thorpe, Jr.John & Ann TownsendVirginia G. TurnerLaura & Dan WhiteHarry & Dortha WiltJoni WittEugene & Nancy WooTrase, Inc.John & Margaret CassidyRobert E. Coller, Sr.Tim & Laura CristGary ElliottJoseph & Isabel EramoShirley EskewLisa & Roger HackneyBarbara HendersonCheryl R. HindsKristine,Mitch& Sam HofstedtTom & Bonnie JonesKathryn A. LesslieBob & Marilyn McDonoughDianne McGuinnessTheresa MorsePhilip & Teresa PetragnaniJoseph & Elizabeth PreissRobert & Elyse RubinJoseph and Carolyn StoffellJohn ChalupaBeth & John DeindorferMarcia & Frederick DunnClaire and Matthew HanrahanHarry & Mona HowellRalph J. JamiesonMaureen McCoyDoreen MollerDelores RicaJoan & Harvey StetsonJohn and Carole BohnerAvalon BruceCatherine CesarineJoyce L. GinsbergMelvin & Eleanor GreenFrank and Victoria GregorichTerry GrunebergChris & Julie HoweE. Ray and Bonnie JohnsonJames C. and Sara Karras, Sr.Edward LipiarzJon & Raeann PfeifferElizabeth ProchazkaJudy & Bart SklarLeona SmithEleanor Stepanik

Thomas & Helen TaylorJohn & Barbara VuzDavid & Judith BouchardSue GallRobert & Diane HaglerClaudia McKinseyJoan WhiteJohn J. YonchaAetna FoundationJullie BurnettClair and Carol BirkmanGerald & Janice MitchellF. Frank Rickards IIIUnited Way of Central MarylandRandall V. CochranHelen M. FoleyFrank T Keenan, JR.D. I. ToddingtonRobert & Lisa RanieriHoward & Patty RosenthalIBM Employee Service CenterRobert & Debra LutzDennis Farmer & Heather HesselSheryl LoveSamuel & Patrice ScheckDuane & Lori DiColaBeverly & Richard CobinSalvatore C. Del SestoMary Elizabeth HutcoeDonald & Mary SchneiderAnonymousLisa SalazarWill & Deanna TroxelUnited Way of Sarasota County, IncMichael HirshonRebecca PaigeGwendolyn StevensMargaret & Madeline WillottIBM Retiree Charitable CampaignSteve & Gwen DudrowDonna Lamie - Lamie Oil CompanyMichael & Lin MarchitelliGabriel GroupMerrill LynchPatricia & Steve CaseyAlan GoberAngela & Mark HughesEric Macks & Suzette LaVigneTheodore & Elizabeth SchmidtMarjorie HendersonTeresa KellermanTracy & Jim ColapietroHugh & Susan Dykens, Jr.Gary FerdigMr. & Mrs. William FisherGretchen HeathmanSara Saltzbart MinierMary & Joe PichiralloLeo & Kathy SchertzPatricia J. SchoonoverHeather & Richard ValeoAnne WarcholRichard & Denise WolcottRobert & Daylene WoodBrian & Noreen Wynne

Cherub (Up to $99)Larry PhillipsDon & Betty VincentRonald McMasterAmerican Express FoundationMcAndrew and Cyr Enterprises, Inc.Caroline & Kevin AdleyCecil BallengerJanet LittleBarbara & Jeff McDonaldMike & Jeanne SpradlinGerald & Mary WalshMargaret & Brant WiggerChris & Sarah MasonDiane & Robert MorseTrudy & Jerry CollinsThomas PrettymanLeslie Trott & Elaine CumiskeyJohn & Laurie CyrDeborah O’NealMaureen WheatEileen Posch

PWSA(USA) is in theCombinedFederalCampaign

If you work for the Federalgovernment and its agencies,

please use CFC ID No. 9858 todesignate PWSA(USA) is to

receive donations. Questions?Contact PWSA(USA) at

1-800-926-4797.

PWSA(USA) gratefullyacknowledges the

printing and mailing ofthis newsletter is madepossible by a generous

grant from theGerald & Dorothy RFriedman New York

Foundation

Valentine ResearchFund: $33,781

as of 4/27/2005Thank you to all ourValentine Sponsors

20 The Gathered View May-June 2005

Thank you for Contributions through March 2005ContributionsWith Much Appreciation We are deeply grateful to our individual, corporate and foundation sponsors whose contributionsenable us to serve, comfort and support all of our families.

We try to be accurate in recognizing contributions, and apologizefor any errors or omissions. If you notice an error; please tell us.

CIBC World MarketsGerald J & Dorothy R Friedman FoundationRachel & Elmer BrubakerTorbert Produce, Inc.PWSA of MichiganE-FundsWilliam & Jennifer StewartLota & Dave MitchellJohn & Joann KellyProduce Exchange Co., Inc.Results Weight Loss, Inc.Ron & Mary Lee HigginsJim & Carolyn LokerRoger & Kathy WilsonUnited Way of NYCRichard & Jolayne AlgerSteven & Judy Hoveland

Operating FundIBM Retiree Charitable CampaignGerald J & Dorothy R Friedman FoundationUnited Way of Allegheny CountyCombined Federal Campaign Niagra FrontierGulf Coast Combined Federal CampaignCoffee for a CauseCombined Federal CampaignIBM Employee Service CenterCIBC World MarketsAT&T Employee Giving ProgramUnited Way of DelawareMerck Partnership for GivingUnited Way Bartholomew Co. Inc.Morgan Stanley Annual Appeal CampaignJensen Beach Community ChurchUnited Way of Northeast FloridaUnited Way of NYCSusan & John AldousHeather BakerRachel & Elmer BrubakerChris & Ted ConklinWilliam and Olive CorleyTeri & Barry DouglasDonald & Peg Goranson, Jr.

Marcia & David McClureUnited Way of Bartholomew County, Inc.David & Michelle CampbellCamperships for Retarded ChildrenDavid & Janice AgarwalPeter HupperichQuality First Produce, Inc.NYPRO, Inc.Fresh StartFlavor 1st Growers & PackersCapri Restaurant, Inc.Jerrold A. Watson & SonsKern Carpenter Farms, Inc.Frank & Melanie CastroCarolyn LetzoLeo & Sonia Talarico

Major Benefactors ($500 and more)

Leonard & Naomi HackerJay & Susan HenochMichael & Linda KederFrank T. Keenan, Jr.John & Joann KellyDebbie LangeStephen Girard & Patsy MonsonHelen F. MurphyPauline NeillCarol L. NormanE. Lorraine PurdyPatricia RafteryOty ReedPatti & Ron SchankinSamuel & Patrice ScheckLon SeidlitzRoger & Ronda West

Matching DonationsBernard P. McKenna .Microsoft Giving Campaign - Richard L. CritchlowAltria Group, Inc. Matching from John C. LabellaSponsored FamilySusan & John AldousMarinus J. BouwmanJulie & Dan CaseySteve & Gwen DudrowTammy EllisSheila HallGail & Robert JoslynTeresa KellermanMichele & Stephen LeightmanTerri & Bill MarksBarbara & Jeff McDonaldJohn & Irene SchulzeMichael & Angie SpradlinAlice & Sergio ViroslavAwareness and ResearchWalk-A-Mile for Riley Feldman Brothers Ed Donovan Construction Robert & Jennifer Leslie Jeffrey & Renee Menary Merrill & Janet Solsrud Carl & Carol UnisAkebono Corp. 5K Run/Walk PWSA of MichiganResearch FundSusan & John AldousRachel & Elmer Brubaker

PWSA Communications Upgrade Denis SullivanIPWSO Fund Walter DragDesignated to PennsylvaniaChapter Rachel & Elmer Brubaker

Jacob W. ArnoldDeb BauteSusan WhiteKhiree BondVanessa NedrickAshley FenderWayne & Karen WendelAnne Kathryn GuthrieArla ThompsonBen LeightmanMichele & Stephen LeightmanMichael McAndrewJacqueline McAndrewLouis and Kristin MuracaLinda RossoWilliam & Tina RossoEllen McDonaldBarbara & Jeff McDonaldNoelle McDougallLisa and Edward BuskeJanet Jenkins New Haven FacultyJanet JenkinsAmy & Harry McDougallVirginia Anne McMahomAmy LanierMaria Christine VucciVirginia DoyleMadison SmithJoyce Mantell & Penny HastingsColin Gabriel NortonDeborah & Jeff NortonIn Honor of Christina JoySpradlin BirthdayMichael & Angie SpradlinTaylor Warren - The TaylorProjectJackie & Kenneth LockwoodJean & Peter StevaAndrea & Bob Warren

In Honor of

Designated Giving

Endowment Barbara & Jeff McDonald Don & Betty VincentMichigan Chapter Support FundEngineering & Environmental SolutionsShowboat Automotive Supply, Inc.United Way of West MichiganPinnacle Construction GroupUnited Way of West MichiganDistinctive FurnitureRobert & Paulette IsraelsDonald & Valentine KolcheffGrace M. Lanning

Theresa GesellAngela & Mark HughesLori & John LensStewart & Bronnie MaurerBarbara & Jeff McDonaldMichael & Charlotte PetersonWarner & Denise UnterbergerDon & Betty Vincent

Prader-Willi syndrome (PWS) is a birth defect first identified in 1956 by Swiss doctors A. Prader, H. Willi, andA. Labhart. There are no known reasons for the genetic accident that causes this lifelong condition, which affectsappetite, growth, metabolism, cognitive functioning and behavior. The Prader-Willi Syndrome Association (USA)was organized in 1975 to provide a resource for education and information about PWS and support for familiesand caregivers. PWSA (USA) is supported solely by memberships and tax-deductible contributions.