MSConnection The National MS Society . . . One thing people with MS can count on. Team Up for the 2002 Bayer MS WALK W e face a tough and difficult opponent in MS. To our advantage is the commitment and determination shared by every- one in the fight. We have MS on the ropes, but in order to defeat this uncompromising opponent – land the knockout punch – we need to draw on our strength: Teams. There is great strength in numbers and no better way to achieve this than forming teams to participate in the 2002 Bayer MS Walk on Sunday, April 21, 2002. It’s a great way to get your co-workers, neighbors, family and friends involved in the fight against MS. Last year, more than half of the money raised nationwide from The MS Walk was raised by teams. That’s over $32 million. Now, that’s muscle! January/February 2002 Vol. 02, Issue 1 Greater Connecticut Chapter continued on page 8 Protein May Play Crucial Role in MS Attacks, Progression R esearchers have reported that an immune-system protein known as “osteopontin” appears to play a crucial role in the immune attack in MS and its progression, and may be a potential target for developing therapies to treat the disease. Investigators sought to identify immune proteins involved in the development of EAE, an MS-like disease, in rats. They used “microarray,” also known as “gene chip” technology, which can identify hundreds of active genes at once. In the experiments with mice, investigators found that osteopontin was very active in areas of myelin damage, both during relapse and remission. In mice that were genetically engineered to lack osteopontin, the progression of EAE was inhibited, and the severity of significantly reduced. The team performed similar genetic screens on brain tissue from people with MS and from people who did not have the disease. In these studies, osteopontin was one of several genes found prominently in MS tissue, compared with controls. Osteopontin was present in immune and nerve cells in areas of myelin damage. Inside This Issue . . . Chairman’s Message . . . . . . . . . . . 2 MS Corporate Achievers . . . . . . . . 4 Research Highlights . . . . . . . . . . . 7 Annual Report . . . . . . . . . . . . . . . . 9 Support Groups . . . . . . . . . . . . . . 19 Calendar of Events . . . . . . . . . . . 20 A team of only nine in 1995, Team Travelers has now grown to more than 200. We’re Now Just A Click Away!! W ith the recent launch of our new and improved Web site, the Chapter is now at your fingertips. Visit the new site at www.ctnmss.org and get real time updates for upcoming programs and events. Tired of those pesky registration forms? Register online with a click of your mouse. Check out pictures, event results or link to the National MS Society Web page for breaking news and online programs. Get tips on fund-raising. Reserve a book from the lending library, view the latest MSConnection before it hits your mailbox, get information on volunteering; find support groups in your area and much, much more. The Chapter’s site is attractive to the eye, easy to navigate and quick. Stay updated – give us a click. ■ continued on page 7
Transcript
MSConnection
The National MS Society . . . One thing people with MS can count on.
Team Up for the 2002 Bayer MS WALK
W e face atoughand
difficult opponentin MS. To ouradvantage is thecommitment anddeterminationshared by every-one in the fight.We have MS onthe ropes, but inorder to defeat thisuncompromising opponent – land the knockout punch – we need todraw on our strength: Teams.
There is great strength in numbers and no better way to achieve thisthan forming teams to participate in the 2002 Bayer MS Walk onSunday, April 21, 2002. It’s a great way to get your co-workers,neighbors, family and friends involved in the fight against MS.
Last year, more than half of the money raised nationwide from TheMS Walk was raised by teams. That’s over $32 million. Now, that’smuscle!
Protein May PlayCrucial Role in MSAttacks, Progression
R esearchershavereported that
an immune-systemprotein known as“osteopontin”appears to play acrucial role in theimmune attack in MS and itsprogression, and may be a potentialtarget for developing therapies totreat the disease.Investigators sought to identifyimmune proteins involved in thedevelopment of EAE, an MS-likedisease, in rats. They used“microarray,” also known as “genechip” technology, which can identifyhundreds of active genes at once.In the experiments with mice,investigators found that osteopontinwas very active in areas of myelindamage, both during relapse andremission. In mice that weregenetically engineered to lackosteopontin, the progression of EAEwas inhibited, and the severity ofsignificantly reduced.The team performed similar geneticscreens on brain tissue from peoplewith MS and from people who didnot have the disease. In thesestudies, osteopontin was one ofseveral genes found prominently inMS tissue, compared with controls.Osteopontin was present in immuneand nerve cells in areas of myelindamage.
A team of only nine in 1995, Team Travelers has nowgrown to more than 200.
We’re Now Just A Click Away!!
W ith the recent launch of our new and improved Web site, theChapter is now at your fingertips.
Visit the new site atwww.ctnmss.org andget real time updatesfor upcoming programsand events. Tired ofthose peskyregistration forms?Register online with aclick of your mouse.Check out pictures,event results or link tothe National MSSociety Web page forbreaking news andonline programs. Gettips on fund-raising.Reserve a book fromthe lending library, view the latest MSConnection before it hits yourmailbox, get information on volunteering; find support groups in yourarea and much, much more.
The Chapter’s site is attractive to the eye, easy to navigate andquick. Stay updated – give us a click. �
The mission of the National MS Society is toend the devastating effects of multiple sclerosis.(860) 953-0601 • 1-(800) FIGHT MS (344-4867) • Fax (860) 953-0602http://www.nationalmssociety.org or www.ctnmss.org (Local Web Site)
Dan Doty, Chairman, Board of TrusteesLisa Gerrol, President and Chief Professional OfficerJill Zorn, Chapter Programs DirectorSusan Raimondo, Community Programs DirectorGary Griffin, Editor
The Greater Connecticut Chapter of the National Multiple SclerosisSociety is proud to be a source of information about multiple sclerosis.Our comments are based on professional advice, published experienceand expert opinion, but do not represent therapeutic recommendationor prescription. For specific information, consult a qualified physician.
The Greater Connecticut Chapter of the National Multiple SclerosisSociety does not endorse products, services or manufacturers. Suchnames appear in this publication solely because they are consideredvaluable information. The chapter assumes no liability whatsoever forthe contents or use of any product or servicementioned.
The publisher reserves the right to refuseadvertising deemed inappropriate to thephilosophy of the National Multiple SclerosisSociety.
byDan Doty
Chairman’s Message
A t the Society’s NationalLeadership Conferencein November, some key
fundamental changes weremade to the organization’sgoverning policies that willeventually impact the Chapterlevel.
The most significant change wasmade to the top level of theorganization. The NationalBoard, which traditionally hadlittle Chapter representation,will now be largely comprised ofChapters. The National CEOwill be accountable to this newboard and Chapters will havemore influence and be able tomake recommendations onnational related activities.
To encourage “barrier free”fund-raising and promoteChapter collaboration,geographic boundaries – inregards to programs and fund-raising – will be diminished,and eventually eliminated overtime. This will be furtherreinforced through theenhancement of policies thatforge partnerships amongChapter Presidents to developdonor and corporaterelationships between markets.Presidents must assist inpursuing these opportunitiesfor the good of the Society asa whole.
At the programs level, aNational Programs ReviewCommittee has been formed torevise the current three-tiered“Program Levels” and focus onoutcome-oriented indicatorswith result-oriented goals. TheSociety will also identify thoseprograms that could bedelivered more effectively on acontract, consolidated orregional basis.
Locally, the first projectcurrently being undertaken bythe Greater ConnecticutChapter is to determine theeffectiveness of our programsand services. The Chapter isworking with EDK Associates,who generously donated theirservices, to perform focus groupsto collect data that will be usedto measure and enhance ourprograms and services.
This year the Chapter plans tobuild and improve upon ouradvocacy and brandingprograms. We will continue toincrease and develop muchstronger family and children’sprograms, increase fund-raising,
Call to Action
Thanks to significant advances in research, the FDA hasapproved several treatments that may alter the underlyingdisease course of multiple sclerosis, and early treatment
is critically important. People with MS should consult theirdoctors about using one of these FDA-approved medications andother effective treatments for the symptoms of MS. If you orsomeone you know has MS, contact the National MultipleSclerosis Society at 1-800-FIGHT MS or nationalmssociety.orgfor more information. �
streamline costs, and increaseour commitment to directfunding of research throughvarious NMSS programs.
Dan Doty was elected aschairman of the board lastOctober. For 12 years, Dan hasbeen one of the top two fund-raisers for the MS Walk. Hehas served on the board foreight years, and is the boardrepresentative to the CapitalRegion Community HealthCharities. He also serves on theExecutive, Budget & Finance,and Personnel Committees.Dan is the Chief of Staff forthe IT Infrastructure Groupfor The Hartford. �
Chapter Receives High Praise
A t the National Leadership Conference inNovember the Greater ConnecticutChapter was honored with 14 national
awards highlighting the excellence that existsthroughout the Chapter. President Lisa Gerrol saidthe awards were a reflection of the Chapter’sdedicated staff, board of trustees and volunteers.
The Greater Connecticut Chapter received thefollowing awards:1. Excellence in Risk Management 2. The Team Approach to Team Approach Award3. Area IV Achievement Award4. Excellence in Corporate Development5. Excellence in Marketing of a Single Program6. Excellence in Volunteer Recognition7. Excellence in Advocacy8. Excellence in Accessibility & Independent
Living Program 9. Research Honor Roll, Diamond Level
10. Excellence in Research Promotion11. Chapter Performance Incentive Program
(CPIP)12. Excellent Original Newsletter Article 13. Excellence in Communications �
Summer Tradition
I t’s been occurring for more than 12 years,draws participants from across theNortheast, and is synonymous with MS. It’s
the Annual Glastonbury Summer LacrosseTournament.Every year morethan 600players, coaches,volunteers andreferees descendon Glastonburyto play in thiswell-knowntournament.And each yearthe warm-heartedtournamentcoordinator andformer chapter board member, Joe Coopercontinues to help those affected by MS bycontinually contributing the tournament’sproceeds to the Chapter’s Ray Howell Fund.This year the tournament raised more than$3,000. Thank you Joe Cooper and all thevolunteers, coaches, players and referees thatmake this annual event a wonderful success. �
MS Sights & Sounds Bike Tour Presented by
Devotion to a Cause & A Touch of Patriotism
A t this year’s 6th annual MS Sights & Sounds Bike Tourparticipants waged two battles: one against multiple sclerosis,the other to emerge and show unity and devotion to our country.
Weapon of choice for the fight against MS was thebike. More than 200 riders saddled up for the 115-mile September tour and raised more than $100,000for MS. The old stars and stripes was theparticipants choice weapon to express theirpatriotism in the wake of the September 11 tragedies.Participants proudly displayed American flags ontheir bikes, and backs thanks to title sponsor Bayer Biological Products. Bayer’sBill Zabel, in efforts to further increase unity among riders, provided sweatshirts to participants that read: “United We Ride,” a gesture greatly appreciatedby event organizers and participants. Individual and team fund-raising resultswill appear in the March/April 2002 MSConnection. �
Visit Our Website at: www.nationalmssociety.org MS Connection 3
Biological Products
PharmaceuticalDivision
Liz McAndrew proudlydisplays the “United We Ride”sweat shirt.
A t this year’s MS Corporate Achievers event the Greater Connecticut Chapter honored 32Connecticut community leaders who have demonstrated exceptional leadership, volunteerism andcommunity service.
Each honoree was awarded the prestigious MS Leadership Award and participated in a special campaignto benefit local programs and fund research to find the cause and cure for MS. Collectively, MS CorporateAchievers raised more than $120,000. �
2001 MS Corporate Achievers Presented by
Front row l-r): J. Holden; M. Song; R. Channing Wheeler, Honorary Chairman; F. Soyster. (Back row l-r): B.Wainman; K. McCormack; C. Forzani; J. Church; B. Driscoll; A. Nafis; R. Siegel; R. Schechtman; C. Sylvester; L.Hurwitz; D. DeRosa; J. Gold; D. Siracusa.
MS Corporate AchieversTop Fund-Raisers 2001 Corporate
AchieversScott Burghoff
Principal IBM Global Services
Paul CerulloNortheast Vice President
AramarkJo Ann Church
Senior Facility ManagerTrammell Crow Co.
Dede DeRosaSenior Vice President & COO
Lincoln Financial GroupBrian Driscoll
Principal Carew, Driscoll & Assocates, Inc.
Sandy EvoyPresident
MODAC, Inc.Carlo ForzaniAttorney at Law
Carlo Forzani, LLCBrian GiantonioAttorney at Law
Phoenix LifeDavid GoclowskiManaging Partner
DT AssociatesJerry Gold
Retired PartnerKostin, Ruffkess & Co. LLC
Jon HitchcockVice President, Station Manager
WTNH Channel 8
Lewis HurwitzPartner
Hurwitz & SagarinTotal: $56,955
Bradford WainmanVice President RegionalManager People’s Bank
Total: $9,850
Jo Ann ChurchSenior Facility Manager
Trammell CrowTotal: $3,335
Richard ShechtmanPresidentGiftcorp
Total: $2,950
Visit Our Website at: www.nationalmssociety.org MS Connection 5
Jack HoldenDirector of National Fleet
BKM Enterprises, Inc.
Lewis HurwitzPartner
Hurwitz & Sagarin, LLC
Shelley MarcusPartner
The Marcus Law Firm
Katherine McCormackDirector of HealthCity of Hartford
A t this year’s Annual Meeting the Chapter recognized andhonored the outstanding individuals and corporationsthat helped make 2001 a record-breaking year.
Everyone’s favorite meteorologist, the humorous Art Horn ofNBC 30, was Master of Ceremonies and keynote speaker JimSnack supplied the magic.
The more than 200 volunteers and Chapter supporters inattendance were also treated to a fantastic video presentationproduced by Peter Galgano and his dedicated staff at AT&TBroadband. The video featured 2001 WALK highlights andcaptured the day’s emotions and dedication put forth byparticipants and volunteers.
To this year’s award winners and the Chapter’s entire membership and community of supporters,we simply say,
THANKS, WE COULDN’T HAVE DONE IT WITHOUT YOU!
AWARD RECIPIENTS
Volunteer CommitteeSusan Austin Keisha Winston
Diane Biegel
Special Event Volunteer AwardJack Holden, BKM Total Office Sharon Pepin, BKM Total Office
2001 Local Employer of the YearGE Medical Systems of Wallingford, CT
MS Achievement Award Karen Smith
MS Father of the YearEric Wells
MS Mother of the YearCornelia Person
Outstanding Print Media AwardShoreline and Elm City Newspapers
Outstanding Public Outreach and Education AT&T Broadband
Development Sponsor of the YearBob’s Stores
Board Member of the YearJack Weber, Chairman
Corporation of the YearBayer Pharmaceutical Division Biological Products
AT&T Broadband’s Peter Galganoand Art Horn
Art Horn presents Bayer’s Bill Zabel with the
Corporation of the Year Award
Susan Austin, Diana Biegel,Art Horn and Keisha Winston.
It’s magic! Jim Snack baffles the crowd and thesetwo guest magicians with his trick.
Visit Our Website at: www.nationalmssociety.org MS Connection 7
Women’s Health and Mobility
A study conducted by investigators at UCLAsuggests that the less able a woman is to walk,the less likely she is to receive female
preventative health services such as Pap smears,mammograms and breast exams.In 1996, while undertaking a study for differentpurposes, investigators mailed questionnaires to 1,164people with MS who had received outpatient care in1993 or 1994 in the United States. The authorscollected information on Pap smears, mammographyand breast exams, blood pressure checks, cholesterolscreenings and physician assessment of health habits.The researchers then compared the rates of use ofthese services to the participant’s mobility levels andto nationally accepted standards for preventative care.For the group as a whole, overall rates for Pap smears,breast exams and mammograms equaled or surpassedthe national standards. However, the use of such testsfor women who were non-ambulatory weresignificantly lower than those of women who werefully ambulatory.They suggest several possible explanations for thelower rates of preventive services for women who werenot ambulatory: people may be reluctant to undergoscreening services that might be uncomfortable orembarrassing, or the medical systems equipment maynot accommodate people with impaired mobility.Currently a NMSS study by William D. Frey PhD isevaluating the results of a survey of people with MS todetermine the nature and extent of their use of health-promoting and preventive measures, how this userelates to the type of health care providers they use,what the barriers to these services might be and howuse of these services compares to the generalpopulation. Data from these studies will help guidethe National MS Society efforts to educating healthcare providers.Editor’s Note: Call Susan Raimondo at the chapter ifyou use an accessible women’s health provider. She isworking with the Connecticut Women and DisabilityNetwork (CWDN) who is compiling a list of AccessibleWomen’s Health Services in CT.CWDN is working with women’s health providers andwomen with disabilities to overcome the barriers facingwomen with disabilities in getting health care.Planned Parenthood offices in Manchester, NewLondon, and Bridgeport all have accessiblegynecological exam tables. Gaylord Hospital inWallingford also hosts a monthly health clinic forwomen with disabilities.
— Research Programs Department �
R e s e a r c h H i g h l i g h t s
Clinical Study
Individuals with relapsingremitting MS who arecurrently taking Avonex
may be eligible for arandomized, double-blindedplacebo controlled clinical study ofNatalizumab (Antegrin) at the MultipleSclerosis Treatment Center at GriffinHospital in Derby Connecticut.
The main goal of the study is to determinewhether the addition of Natalizumab,which blocks white blood cell migrationinto the central nervous system, canprevent relapses in subjects who haveexperienced one or more relapses whiletaking Avonex in the previous year.
For more information, please contactJoseph B. Guarnaccia, MD, PrincipalInvestigator, at (203) 732-1290 or e-mail [email protected]. �
The authors conclude that the immune proteinosteopontin may play several roles inincreasing inflammation in the centralnervous system in EAE, an animal model forMS, and is present in the brains of individualswith MS. In EAE, osteopontin may play a rolein determining severity of disease andprogression. Thus, osteopontin may present atarget for developing therapies that block theprogression of EAE and perhaps MS. Theselaboratory findings present an excitingopportunity for future study. However, moreresearch is required to determine the exactroles of this protein, as well as the therapeuticpossibilities it presents. �
Protein May Play CrucialRole . . .(continued from page 1)
Insurance
A re you having trouble with yourhealth insurance covering MSmedications or changing the
structure of the copay system?
The chapter is gathering stories andworking to advocate for people with MSto have more access to MS medications.Please call Susan Raimondo at(860) 233-7617, ext. 229 or [email protected]. �
Four times a year theNational MS Society hostsinformative
broadcasts overthe Internet. The60-minuteprograms are onvarious topics forpeople affectedby MS.
The programs start with a 30-minute live audio presentation,followed by an interactive questionand answer segment. Using Email,people can send questions to thepresenter. Later this year theSociety will open chat rooms onthe site.
Directions on how to participatein the broadcasts are available atwww.nmss.org, the Web site ofthe National MS Society. Programswill be broadcast through theMicrosoft Windows Media Player, astandard feature on all computerswith Windows. Tech support isavailable.Those tuning in to MS Learn-On-Line say that they have newknowledge and confidence abouttheir MS. Over 80 percent of peoplesurveyed feel more confident andmore in control of how theyrespond to MS in their lives.UPCOMING PROGRAM:Thursday, March 21, 8:30 p.m.Topic to be announced on theNMSS Web site.
***WEB NEWS***MS Learn-on-Line participants nolonger need to download andupdate Real Player audio software.Participants can use the WindowsMedia Player audio software thatis on most computers. �
Locally, Team Travelers, one ofthe Chapter’s largest teams,raised $32,428 for the 2001 MSWalk. They had 233 walkersand 15 volunteers. In addition,their national team, MSTeamTravelers, consisting of 45 fieldoffices nationally, raised$120,000 in 2001 earning themtop National Team honors.
How do you go about forming ateam? All it takes is four ormore people. Become a teamcaptain and start recruiting!Approach your employer aboutsupplying T-shirts, sponsorshipand matching gifts.
Team Travelers captain JeanCormier says there are manybenefits of being a teamcaptain.
“I have met so many wonderful people because of my involvement,”she said. “I have also had my faith in humanity restored each time Isee so many of our employees involved. It makes them feel that theyare truly doing something that will help bring an end to MS.”
Jean says Travelers has been very encouraging and supportive sincethe team’s inception in 1995. They supply team T-shirts, sponsorship,and help with recruitment. A company-wide message is sent out inthe beginning of February and a second in the middle of the month.
“If I could give advice for anyone thinking of forming a team, it wouldbe to start small and know your team will grow over the years,” saysJean.
Team MS is about building relationships and bringing new friendsinto the fight against MS. So let the recruiting begin. Round up yourfriends, family and co-workers. Every walker helps bring us thatmuch closer to ending the devastating effects of MS.
For more information on Team MS or if you are interested in forminga team contact the Chapter at (860) 953-0601. �
Team Up for the 2002 Bayer MS WALKcontinued from page 1
Walkers from Team Travelers arecongratulated at the finish line by MS
Ambassador Barbara Ford.
Visit Our Website at: www.nationalmssociety.org MS Connection 9
ANNUAL REPORT
A t the Greater Connecticut Chapter of the National Multiple Sclerosis Societywe are committed to providing and increasing services and programs so thatpeople with MS can enhance their quality of life. Among the dozens of
programs we offer people with MS and their families are community referrals,equipment assistance, respite care, support groups, employment education andphysical activity programs.
We are also striving to accelerate the pace of discovery to find the cause, furtheradvance therapies and find a cure for MS by increasing our local support of research.Nationally, over $30 million is spent annually to support 300 investigators at thebest medical centers, universities and research institutions in the U.S. Locally, morethan $1.5 million is allocated to Yale University and the University of ConnecticutHealth Center.
Thank you to every supporter for helping create, share and accomplish our vision ofmaking 2001 a record breaking year in fund raising and services provided. In 2002we must continue to depend on each other so that someday our vision of a world freefrom the devastating effects of MS will become reality.
Dan Doty Lisa GerrolChairman, Board of Trustees President and Chief Professional Officer
T he Greater Connecticut Chapter’s MS Junior Ambassadors are an extraordinary group of youngpeople that have touched the lives of many with their individual stories.
They have one common thread: each of them has a parent with multiple sclerosis. These young peoplewillingly volunteer their time to speak to the media, community organizations and corporations aboutthe affects MS has on the entire family.Their stories are incredibly moving and inspirational. Their lives differ in responsibilities and prioritiesfrom other kids of similar ages. Many of the junior ambassadors have willingly accepted moreresponsibility in their households to ease the demands placed on the parent with MS. They talk ofcooking for their parents and younger siblings, doing the laundry, helping administer injections, andhelping younger siblings with their schoolwork.They are articulate, caring, and mature well beyond their years. Each of them has accepted roles thatinspire and touch those outside the MS community.
Name: Robin Cohen Age: 13Hometown: North HavenFamily member that has MS: FatherWhat would you do if your life couldbe “MS Free” for one day?“Go to an amusement park with my dad.”Junior Ambassador highlight: Goingto Channel 30 television.Advice for other kids thinking ofbecoming ambassadors: “It’s great tomeet other kids going through the samething.”Hobbies: Soccer and shopping.
Name: Brody Day Age: 8Hometown: West HartfordFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day?“Jump with my mom on my trampolineand go to an amusement park.”Junior Ambassador highlight: Beingthe co-host of the CrayonMan show.Advice for other kids thinking ofbecoming ambassadors: “It’s a lot offun and you get to do cool grown-upthings like television shows.”Hobbies: Football
Name: Whitney Day Age: 14Hometown: West HartfordFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day?“Go to Disney World with my family.”Junior Ambassador highlight:Speaking at Bayer CorporationAdvice for other kids thinking ofbecoming ambassadors: “It’s a greatexperience and you’ll have a lot of fun.”Hobbies: Sports, school and hanging outwith friends.
Name: Dustin Day Age: 16Hometown: West HartfordFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day?“Celebrate by doing things my mom can’tdo.”Junior Ambassador highlight: MSWALKAdvice for other kids thinking ofbecoming ambassadors: “It’s a greatexperience.”Hobbies: Wrestling and weightlifting.
Name: Robert Tolk Age: 15Hometown: AvonFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day?“Go for a long walk with my mom.”Junior Ambassador highlight: Beinginterviewed on television.Advice for other kids thinking ofbecoming ambassadors: “It’s lots offun and at the same time you are doingsomething so helpful.”Hobbies: Cross country, wrestling andtrack & field.
Name: Mikayla Wells Age: 7Hometown: PlainvilleFamily member that has MS: FatherJunior Ambassador highlight: Beingon television.Advice for other kids thinking ofbecoming ambassadors: “I love mydad and it’s a fun way to help.”Hobbies: Reading, dancing and soccer.
Visit Our Website at: www.nationalmssociety.org MS Connection 11
Name: Quintin Wells Age: 9Hometown: PlainvilleFamily member that has MS: FatherJunior Ambassador highlight: Beingon television.Advice for other kids thinking ofbecoming ambassadors: “It’s lots offun.”Hobbies: Football, basketball andbaseball.
Name: Kristine Person Age: 14Hometown: PomfretFamily member that has MS: MotherJunior Ambassador highlight: Beingon television.Advice for other kids thinking ofbecoming ambassadors: “It’s a greatexperience and a lot of fun and you get tomeet a lot of neat people.”Hobbies: Computers, reading, playingguitar, rock climbing, air rifle shootingand swimming.
Name: Tess Person Age: 7Hometown: PomfretFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day?“Play outside games with mom and thewhole family.”Junior Ambassador highlight: TheCrayonMan television show.Advice for other kids thinking ofbecoming ambassadors: “It’s fun.”Hobbies: Soccer, swimming, playingwith dolls and eating ice cream.
Name: Shane Person Age: 9Hometown: PomfretFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day? “Playsports with mom.”Junior Ambassador highlight: Beingon television.Advice for other kids thinking ofbecoming ambassadors: “You get tomeet CrayonMan.”Hobbies: Soccer, Legos, computers andplaying guitar.
Name: Hayley Petit Age: 11Hometown: CheshireFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day? “I wouldn’thave to worry about my mom as much.”Advice for other kids thinking ofbecoming ambassadors: “It will be funand we will all have something incommon.”Hobbies: Basketball, reading andhanging out with friends.
Name: Amber Manning Age: 16Hometown: LebanonFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day?“I would be happy.”Advice for other kids thinking ofbecoming ambassadors: “Definitelyjoin it is worthwhile to know that you arenot alone in this situation.”Hobbies: Singing, horseback riding,hiking and camping.
Name: Kelsey Hodge Age: 11Hometown: MadisonFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day? “Goshopping and play soccer with my mom.”Junior Ambassador Highlight: Beingin the newspaper.Advice for other kids thinking of becoming ambassadors: “It’s reallyfun. It’s a good way to show your support.”Hobbies: Soccer, collecting stickers,playing the flute and singing.
Name: Andrew Hodge Age: 13Hometown: MadisonFamily member that has MS: MotherWhat would you do if your life couldbe “MS Free” for one day? “Gomountain biking with mom.”Junior Ambassador Highlight: Beingin the newspaper.Advice for other kids thinking ofbecoming ambassadors: “It’s a goodthing to do.”Hobbies: Mountain biking
Greater Connecticut ChapterFiscal Year Ending 9/30/01
Fundraising6%
Increase in Net Assets
9%
Client and Community
Services52%
Management and General
4%National Programs and Research
29%
REVENUES AMOUNT PERCENTAGE
Other Income 110,899 6%Memberships and Contributions 128,686 7%Bequests and Legacies 42,324 2%Donated Services, Programs,Materials
45,000 2%
Special Events 1,225,064 67%Combined Health Appeal andFSC
223,510 11%
Direct Mail Program 93,928 5%
TOTAL 1,869,411EXPENSES AMOUNT PERCENTAGE
Client and Community Services 962,712 52%National Programs and Research 543,007 29%Management and General 79,788 4%Fundraising 114,629 6%Increase in Net Assets 169,275 9%
TOTAL 1,869,411
Visit Our Website at: www.nationalmssociety.org MS Connection 13
Fire Safety
S everal times over the years, we are made aware of familiesliving with MS who have suffered a devastating house fire.When mobility limitations are severe, a “fire plan” can make
the difference between life and death. Planning ahead is essential.Here are some key areas of fire safety:
Create A Plan:Meet with household members, care providers and close friends or neighbors. Discuss the dangers of fires,severe weather and other emergencies that could occur, and limitations you or other family memberswould have in response to these. Develop a plan for what needs to be done for each type of emergency. Ifyou have mobility impairment or another disability that would limit your ability to safely exit your homein a timely manner, contact the fire department to discuss safety procedures. You can request that arepresentative from the fire department visit your home to discuss these procedures.
Draw An Escape Plan:Be prepared by drawing a floor plan of your house detailing all the exits, windows, stairs and fireextinguishers. Indicate at least two escape routes from each room and to the exterior. Practice your escapeplans so they become routine.
Create A Safer Home Environment:If you or someone in your home uses a wheelchair, make sure more than one exit from the residence iswheelchair accessible.
Install Smoke Detectors:Most fatal fires occur at night when people are sleeping. Clean and test them once a month; changebatteries at least once a year.
Do a “Home Hazard Hunt”:Repair any defective electrical wiring, plugs or cords. Smell for leaky gas connections; call a professionalfor repairs. Have chimneys, flue pipes, vent connectors and gas vents cleaned and repaired by aprofessional. Store all weed killers, pesticides and flammable products away from heat sources. Eliminateclutter!
Post Emergency Numbers:Post numbers near the telephones and teach your children how and when to call for help.
If you are significantly limited with mobility, consider getting a medical alert system that will allow you tocall for help with the push of a button. When selecting a home within a multi-family housing complex, tryto occupy a unit on the ground floor and nearest safety exits.
Keep a phone or flashlight beside your bed. A whistle may also be useful to warn others.
In the Event of a Fire:Get out, stay out! Leave as quickly as possible. When exiting, feel the bottom of exits with the palm ofyour hand. If they are hot, find another way out. Pull closed as many doors as possible between you andthe fire. Remain low and try not to inhale more than necessary. Call the fire department from outside thebuilding.We sincerely hope you will never have such an emergency crisis in your homes. Being prepared couldsave you and your family’s lives. This information was compiled from information provided by: BetsyFarkas, VP Program Development, Western New York NMSS, The American Red Cross, National FireProtection Association and Eastern Paralyzed Veterans Association. �
A ttention Kids: Looking for a great gift formom or dad for Valentines Day? Want to leteveryone know just how cool mom or dad is?
Well here’s your chance!
Nominate your mother, father or spouse for the2002 MS Mother or Father of the Year Award. Theaward honors a parent from the Greater ConnecticutChapter area who has multiple sclerosis and is anoutstanding parent despite the daily challenges they face.
There are lots of creative and fun ways to nominate aperson. Draw a picture, make a video, send photosor write a letter – but remember keep it a secret!You don’t have to do it all yourself, get your brothers andsisters involved or have a teacher, friend or parent writethe nomination for you.
Whatever you choose, just explain why your mom or dad should be the parent of the year. Tell us storieswhy you think your mom or dad is the absolute greatest. Use as many examples as you can andalso tell us how MS affects mom or dad’s life and yours too.
What’s in it for you? Besides being considered mom or dad’s favorite kid for life, if your parentis chosen, your name will appear in local newspapers and reporters may call to interview youand your famous mom or dad. Hey, kids in school may start asking for your autograph.
Nominations are due February 22, 2002. Make sure your nomination includes your name, mom ordad’s name, and your phone number. Send your nominations to Jane Ferketic, National MS Society, 705North Mountain Road, Suite G102, Newington, CT 06111 or e-mail [email protected]. �
What is WAMS (Women Against MS)?
WAMS celebrates women teaming together to make a difference for all individuals and their families who are coping with the devastating effects of MS.
Through WAMS we hope to raise awareness and support in our fight against MS.WAMS raises monies in support of the programs,
research and services offered by the Chapter.
Contact Mary McClintock, Development Manager, Greater CT Chapter(860) 953-0601 x235 [email protected] �
2001 MS Father of the Year Erik Wells and his family.
Visit Our Website at: www.nationalmssociety.org MS Connection 15
Have You Considered A Planned Gift ToThe National MS Society?
There are many ways to give to the National MS Society tohelp us continue our important work of ending thedevastating effects of MS. Here are some of the ways:
Bequest in Your Will:Everyone can make a bequest and leave a meaningful gift to theNational MS Society.You may avoid estate taxes.
Charitable Gift Annuity:Receive lifetime payments when you give a gift of $10,000or more.
Charitable Trusts:We accept a wide variety of trustarrangements that your advisor can incorporate into your estateand tax plans.
Gifts of Stock & Real Estate:We can help you arrange a gift of stock or other appreciatedproperty so that you can maximize your tax savings. You maygive a remainder interest in your home to the Society and stilllive in it for the rest of your life.
Gifts of Life Insurance:Give an existing policy, or name the Society as beneficiary.
Retirement Gifts:Remember the Society in your retirement plan and realize taxbenefits by naming the Society as an irrevocable beneficiary orassign your pension benefits.
To obtain more information about any of the gift types above,please contact Mary McClintock, Development Manager at (860)953-0601 x235, e-mail [email protected]. �
formerly New England Wheels West Inc.
Builders of Quality Vehicles for the Physically Challenged15F International Drive, East Granby, CT 06026
Phone: 860-653-8064 Fax: 860-653-4331
TRUST YOUR FAMILY’S SAFETY TO OUR FACTORY TRAINED TECHNICIANS
SEE US FIRST FOR QUALITY SERVICE, VANS & EQUIPMENT
Safety, Experience, Reliability
� Custom Van Conversions� High Tech Driving Systems� Lifts – Wheelchair & Scooter
� Needs Assessment� Hand Controls� Commercial Transporters
HUNDREDS OF SATISFIED CUSTOMERS – REFERENCES AVAILABLE
Licensed by Dept. of Motor Vehicles – Fully InsuredCHARTER MEMBER: NATIONAL MOBILITY EQUIPMENT DEALERS ASSOCIATION
FinancialAssistance
Many people withMultiple Sclerosis havelimited financial
resources. This often placesthem inpositionswhere theyare unable toobtain needed items orservices that would enhancetheir quality of life and achievetheir highest level ofindependence. The NationalMultiple Sclerosis Society,Greater Connecticut Chapter’sFinancial Assistance Programis designed to address this.
Examples of items andservices that can beconsidered for partialassistance by the Chapterinclude, but not limited to:
– Durable medical equipment– Bathroom equipment– Wheelchairs (manual or
Hello I am 10 years old and my dad was diagnosed with multiplesclerosis in 1998.
In 1999 my classmates heard about my Dad’s MS and felt bad so theystarted giving me their leftover lunch money. It was in nickels, dimesand quarters. I got a jar and started saving it so I could give it to theMS Society when it was full.
Well it’s September 2001 and it’s full. I emptied the jar, counted it outand rolled all the change. My goal was $50 but I am happy to enclosea check for $53. Please use this money to help find a cure for MS.
Sincerely,
Laurie RoheShelton, CT �
Dear Editor:
Please pass on to all the staff involved with the MS Vacation Week,my thanks for such an extra special week. We are very fortunate tohave such dedicated people who are sensitive to our needs and putaside their own concerns so that we can have a week to remember.
I know that it takes a year of preparation for vacation week andwithout the financial support it would not be possible. My sincerethanks to those that provide financial support and give their timeand talents to make it special for us campers.
I also wanted to thank everyone who participated in the Chapter’s2001 Annual Meeting. The program was wonderful and Art Horn dida great job as master of ceremonies. It was nice to see participationfrom so many young people.
Thank you for taking the time to plan so well. It was a mostenjoyable day and I am grateful to everyone who made it possible.
Sincerely,
JoEllen Jansing
Editor’s Note: The Swindells Charitable Foundation, Fleet BankTrustee, The Citigroup Foundation and The GeorgeA. and Grace L. Long Foundation funded MSVacation Week. The Annual Meeting was partiallyfunded by Berlex Laboratories. �
Aquatic ProgramsChampions Health Club,Cromwell. Mondays and Fridays10:45 a.m. Call Lynn at (860)267-7012.Gaylord Hospital, Wallingford.Monday-Saturday during postedhours. Call pool office (203) 284-2800 x3438. �
What’s New In The Raymond P.Howell Library?Books:AdvancedConcepts inMultiple SclerosisNursing Care.Edited by JuneHalper andpublished by Demos MedicalPublishing, Inc., 2001.
Disability Workbook forSocial Security Applicants,Fifth Edition. Written byDouglas M. Smith, Attorney atLaw, and published byPhysician’s Disability Services,Inc. 2001. Managing yourapplication for Social SecurityDisability Insurance Benefits.152 pages.
Getting Life. A novel by JulieShaw Cole. Published by TheAvocado Press, 2000. 303 pages.
Living Beyond MultipleSclerosis: A Woman’s Guide.Written by Judith Lynn Nicholsand her online group of MSsisters. Published by HunterHouse, 2000. 272 pages.
When the Road Turns.Inspirational stories by andabout people with MS. Written byMargot Russell with a prologueby Montel Williams. Published byHealth Communications, Inc.,2001. 281 pages.
Videotape:Yoga with Eric Small.Produced by the NationalMultiple Sclerosis Society,Northern & Southern CaliforniaChapters, 1999. Adapted forpeople with multiple sclerosis orother disabilities. 2 copies.Running time: 100 minutes.
To borrow these materials orfor a complete list of libraryresources, contact theChapter at (860) 953-0601. �
I have MS but MS does not have meBy Rita DeJohn, Tolland
I prefer to be regarded as ONE who–– thinks about the present
– hopes for the future– is able to feel joy about
whomeveror
whateverI encounter.
I would also like –to be appreciated
as a PERSONwho is ableto assess
andto accept
the realities ofmy condition. �
Letters to the Editor:
Visit Our Website at: www.nationalmssociety.org MS Connection 17
Home Sweet HomeHEALTHCAREWheelchairs – Manual,
Motorized, & Lightweight
Bathroom Aids
Stairway & Wheelchair Lifts
Hospital Beds • Walkers
FREE IN-HOME EVALUATIONSDELIVERY AVAILABLE
We bill Medicare and most other insurances
Hours: Mon-Fri, 8:30-6; Sat 9-5100 Main St., Middletown • 346-3336
657 Silas Deane Hwy, Wethersfield • 529-6305112 Main St., East Hartford • 568-3710
Home Healthcare because we care1-800-4-PELTONS1-800-473-5866
Wish List:• Full size refrigerator (in good
working order; appropriate for an office kitchen)
• Color desk jet printer for an IBM computer
• Photographers for events• Lightweight wheelchairsPlease contact the Chapter at(860) 953-0601 if you wish todonate any of these items. �
ClassifiedsFor Sale: 1999 IMS DodgeGrand Caravan loaded.Golden white pearl/gray, mintcondition, 25,000 miles, CD andcassette, 10 speakers, 17-inchwheels. Retail $50,095, asking$26,999. Call Jon at (860)496-1890 or [email protected] Sale: 1989 PlymouthVoyager. Very good condition,54,000 miles. Hand controls andwheelchair lift; asking $4,900obo. Call Mary at (860) 739-5111 or 860-739-5300.For Sale: Brand new neverused Pride Celebritymotorized scooter, adjustableheight/swivel power seat,basket, lights, two batteries;asking $4,000. Call FrankO’Donnell (203) 924-4486.For Sale: LARK three-wheelrubber tired motorizedscooter, adjustable heightswivel power seat, basket, 2batteries $500 firm. Call RobertMcBrair (860) 295-0191.For Sale: Rascal four wheelchair with a lumbar supportand seat lift mechanism. Asking$2,000. Call Joan at (203)874-1979. �
Local Organizations Contributeto the Mission
T he Greater Connecticut Chapter would like to extend aspecial thanks to the following organizations, businesses andclubs for hosting fund-raisers to benefit the MS Society.
Your time and energy dedicated to helping end the devastatingeffects of MS is greatly appreciated.
A+P Tea Co., Old Lyme: Donated $185 raised from casual dressdays.
Chubb Insurance, New Haven: Donated $293 raised from thecompany’s Blue Jeans Fridays.
Glastonbury Lacrosse Club, Inc.: Donated $3,000 raised from theclub’s annual lacrosse tournament (see page 3). �
Friendly VisitorsA Volunteer VisitingProgram to Assist
Elderly and Disabled Persons
Friendly Visitors:
• Are trained and screenedvolunteers who visit one totwo hours a week.
• Help homebound personsremain self-reliant andindependent.
• Assist with tasks that havebecome difficult such asreading, outings, walkingand writing letters.
• Are critical links betweenisolated adults and thecommunity at large.
• Are neighbors helpingneighbors.
For more information,contact Amy Watkins at(860) 953-0601 ext. 247. �
New ProgramsYoga
An excellent form of exercise forpeople with MS.
Instructor: Karen Clarke.Locations:
Groton, Ledyard and PrestonCall the Chapter at
(860) 953-0601 for times and dates.
Tai ChiA healthy exercise that gently works the muscles
while encouraging a meditative state of mind.
Where: Central ConnecticutTai Chi Ch’uan, Meriden
When: Saturday MorningsFor more information and to register contact, Lynette Coleman at
(860) 953-0601 x238
Donate UnwantedVehicles to HelpFight MS
Having difficulty gettingrid of an unwantedvehicle? Tired of
placing classified ads?Worried about the vehicle’sattractiveness to car hunters?Well now you can donatevehicles to the NationalMultiple Sclerosis Society fora benefit that’s two-fold. Yourdonation not only helps to endthe devastating effects ofmultiple sclerosis, but you cantake an income tax deductionbased on the blue book valueof the vehicle. If you have avehicle you would like todonate to help end thedevastating effects of MS, callthe National MultipleSclerosis, Greater ConnecticutChapter at (860) 953-0601 toarrange for a pick-up.Remember, we do not rejectvehicles based on theirappearance or condition.Whether its rust, brokenwindows or blown engines, allvehicles are welcomeadditions to the Chapter. �
Please contactleaders forinformation andremember that datesand times maychange from monthto month.
The names and numbers listed arenot to be used for anysolicitation or promotional purpose.
For other supportgroup informationcontact the Chapteroffice.
OTHER SUPPORT
Infoline24 hour counselingDial “211”
Samaritans24 hour support(860) 232-2121
*Groups may changedates from month tomonth, please callleaders beforeattending a group.
Support Group News
T he Chapter is offering the following newsupport groups for special audiences:
Caregiver Support Group
Join a group of other caregivers to discuss how todeal with stress and how to balance your needsand those of your family members. Beginning inJanuary, the group will meet (via telephone) oncea month on a Tuesday evening for one hour, andwill be facilitated by a professional. Call theChapter to register.
Parenting Support Group
MS affects young adults in the prime of life, oftenwhen they are raising families. The Chapterwould like to start a telephone support group ledby a professional to help parents with MS get thesupport and advice they need. Call the Chapter ifyou would like to become involved in a group forparents.
FARMINGTON1st Tuesday, 7 pmNorthwest Village SchoolWheeler ClinicAnita (860) 674-0451
GLASTONBURY3rd Monday, 7 pmFirst Church of ChristCongregationalSharon (860) 647-0429David (860) 633-8533
Newly Diagnosed Groups
Many newly diagnosed individuals express thedesire to meet and talk with others in similarsituations. A diagnosis of MS raises many newissues and surfaces complex emotions. Findcomfort and support with others facing the samechallenges, and learn how others succeed. Call theChapter for information.
Young Professionals Group
Are you between the ages of 20 to 35 and lookingfor other young working people with MS? TheChapter would like to connect you with your peersfor support and networking. Call the Chapter ifyou are interested in a group for youngprofessionals with MS.
To find out more about these or other groupsin your area, or to find out how to start yourown group, call Amy at the Chapter at (860)953-0601 ext. 247. �
NEW LONDON 4th Wednesday, 6:30 pmLawrence and MemorialHospital, BakerAuditoriumCarol Vara (860) 442-0711 ext. 2483
VERNON1st Friday 7:00 pmVernon PoliceDepartment,Community RoomRhona (860) 644-0038Nancy C. (860) 742-5155Nancy N. (860) 871-6634
WATERBURY3rd Tuesday 4:00 pmFirst CongregationalChurch of WaterburyRay (203) 755-0221
WATERBURY1st Friday 7:00 pmSenior Center at SSPeter and Paul RomanCatholic ChurchRay (203) 755-0221
WEST HAVENThursdays 12 pmVA Hospital,Bldg.22nd FloorMary Lou (203) 932-5711ext.2276
* * * * * * * * * *
National Multiple Sclerosis SocietyGreater Connecticut Chapter705 North Mountain Road, Suite G-102Newington, CT 06111
Non-Profit Org.
U.S. Postage
PAID
Hartford, CT
Permit No. 01870
Calendar of Events
Feb. 7 Making effective choices: emotional health teleconference Featuring: Rosalind Kalb, PhD 7:30 pm – 9 pm
Feb. 27 Maintaining or seeking employment teleconferenceFeaturing: Steve Nissen, M.S., CRC, 7-8:30 pm
March tba Newly Diagnosed Workshop: Series of three evening Teleconferences. Call the Chapter for more information.
March 23 Spring Educational ConferenceFeaturing: Timothy Vollmer. Holiday Inn,North Haven
April 21 2002 Bayer MS Walk – Statewide
May 1 2002 WAMS (Women Against MS)Windsor Marriott, Windsor, CT
June 2 2002 BKM/Steelcase MS Tour for the Cure Griffin Center, Windsor, CT
For information about the programs and events presented by theGreater Connecticut Chapter, please contact us at 1-800-233-7617or visit our website at www.ctnmss.org. �
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The MS Society needs yourhelp. If you notice any articlesin your local paper thatmention the MS Society or aperson with MS, please CUTTHEM OUT!
