You cant light a spark if you

dont first carry

a flamewe

are all heroes

and friends.

Melissa Etheridge

DECEMBER 2007

L O O S E CONNECTIONS

www.ednf.org

TABLE OF CONTENTSWINTER 2007

FEATURES

Why Does EDS Matter? ......8This is Whats Important ..21

MEDICAL

Ask the Doctor ....................6How to Live Well with Chronic Pain ......................15

CONFERENCE

Special Section ............ 11-14

DONORS

2007 Donors, Memorialsand Tributes ................ 16-20

MEMBERSHIP & NEWS

EDNF 2008 Theme .............2Triple It! ...........................3EDNF News .................... 3-7Sabal Fdn., San Diego ..... 8-9Kids & Teens .....................14Board of Directors ...............2Submissions Guidelines ......3Membership Form .............23

COVER: THE VERY FIRST LOOSE CONNECTIONS IN 1986

PAGE 11: 2008 CONFERENCE SECTION

PAGE 16: DONORS, MEMORIALS & TRIBUTES

INSIDE: PAIN MANAGEMENT M.R.G.

L O O S E CONNECTIONS

PUBLISHERS INDEX

Published Quarterly by

Ehlers-Danlos

National Foundation

FOUNDER

Nancy Hanna Rogowski

1957 1995

President & CEO

Cindy Lauren

Board of Directors

Robin Coppi

Michele Darwin

Richard Goldenhersh

Jeanne Kingsbury

Cindy Lauren

Charlotte Mecum

Professional Advisory

Network

Patrick Agnew, DPM

Peter Byers, MD

Edith Cheng, MD

Joseph Coselli, MD, FACC

Joseph Ernest III, MD

Clair Francomano, MD

Tamison Jewett, MD

Mark Lavallee, MD

Howard Levy, MD, PhD

Nazli McDonnell, MD, PhD

Dianna Milewicz, MD, PhD

Anna Mitchell, MD, PhD

Raman Mitra, MD, PhD

Linda Neumann-Potash, RN, MN

Terry Olson, PT

Mary F. Otterson, MD, MS

Melanie Pepin, MS, CSG

Elizabeth Russell, MD

Ulrike Schwarze, MD

Karen Sparrow, PhD

Brad Tinkle, MD, PhD

Mike Yergler, MD

Editor

Barbara Goldenhersh, PhD

Graphics/Type

Mark C. Martino

PAGE TWO WINTER 2007

EDNF ANNOUNCES 2008 THEMEBY BARBARA GOLDENHERSH, PhD

For 2008, EDNF has decided to honor its volunteers, those without whom the organization could not do its work, and look to those who now understand the necessity for every individual to volunteer and take a part in their own well-being. There are so many thoughts directing us to this end, so many prayers and wishes that have gone unanswered. These require each of us to step up and do our part.

The words of our prayers must not fall off our lips like dead leaves in autumn. They must rise like birds out of the heart into the vast expanse of eternity. Abraham J. Heschel

During the coming year, let us do all the things which we meant to do some day, but which we have postponed or neglected. If we have been waiting to perform an act of charity, to discharge a duty, to assume a responsibility, let us do these things now. Help us to proceed with all haste to do now this day, this week, this year all the things that will make this a year of achievement, growth, and blessing for each of us.

Internalize these thoughts and realize what each of us, what you, can do to improve our lives and those of our fellow EDSers. If you have not yet stepped up to volunteer, let these words adapted from a book of prayer encourage you.

Our physical characteristics may be determined by heredity, but our human stature we fashion for ourselves.

Our environment determines the language we speak, but it is we who determine

whether our words are cruel or gentle, cutting or comforting.

Because we are free to choose, we are capable of change. We can give a new direction to our lives. Take meaning from the realization that we have responsibility for yesterday, opportunity for tomorrow, and choices to be made today. Only that which compels us to live in mutual helpfulness enables us to overcome what each of us faces as we deal with EDS.

EDNF themes guide the Foundation based on the overriding needs, interests, and experiences of the membership. Research was the 2005 focus: EDNF raised over $80,000 toward that end. Those monies were rewarded by the recently published outcomes described in the Fall 2007 Loose Connections. The 2006 theme of Awareness produced May Awareness Month and the Patient Brochure (available for download from ednf.org). The 2007 theme emphasized Educating the Medical Community: Teaching the Doctors. During this year, EDNF began its series of Medical Resource Guides for the medical community, with individual specialty MRGs underway an ongoing project as EDNF endeavors to share information with both doctors and institutions.

Every individual has a place to fill in the world, and is important, in some respect, whether he chooses to be so or not.

Nathaniel Hawthorne (1804-1864)

GUIDELINES FOR SUBMISSIONSTO LOOSE CONNECTIONS

For text documents, use Helvetica or Times of at least 10 points (preferably 12 to 16) in size, so our editors can easily read your document and prepare it for publication. Attach the text document in either Word (.doc) or Rich Text Format (.rtf) to an e-mail sent to editor@ednf.org that also tells us how to reach you for more information.

For photographs, attach them to an e-mail to editor@ednf.org; send three to five images that are at least 2400 x 3000 pixels (300 dpi resolution & 8 x 10 inches) and without compression beyond that per-formed by the camera when it was taken. In the e-mail, please identify the event or cause for the photographs, including any relevant iden-tification (persons involved, date, photographers name if needed) and how to reach you for more information.

Following are the deadlines for the next year of four issues; special arrangements can be made with the editors before these dates, but not afterwards.

PUBLISHED ON

FEATURES DUE

COLUMNS DUE

SPRING 08 MAR 14 JAN 25 FEB 15

SUMMER 08 JUNE 22 MAY 11 MAY 25

FALL 08 SEP 8 JULY 18 AUG 15

WINTER 08 DEC 12 OCT 20 NOV 3

Text articles, photographs, or any other submissions to Loose Connections are accepted only on condition that publication of that material is not under copyright or other restrictions on its publication. Ehlers-Danlos National Foundation reserves all and final editorial privileges, including the right to choose not to print a submitted story; submissions may be edited at the discretion of the editorial staff.

The opinions expressed in Loose Connections are those of the contributors, authors, or advertisers, and do not necessarily reflect the views of Ehlers-Danlos National Foundation, Inc., the editorial staff, Professional Advisory Network, or the Board of Directors.

EDNF does not endorse any products.

1.

2.

3.

L O O S E CONNECTIONSWINTER 2007 PAGE THREE

TURN $25 INTO $75TRIPLE IT!

EhlErs-Danlos National Foundation is very pleased to announce the return of Triple It! This popular and successful fundraiser is offered by an anonymous donor for a second year. After seeing the inaccurate TV portrayal of EDS, our donor has asked that all donations in this campaign go toward raising awareness of EDS. With the generosity and support of EDNF members and friends like you, we can surpass last years outstanding results.

Visit www.firstgiving.com/tripleEDNFto make an on-line credit card donation.

Or send your check directly to EDNF (3200 Wilshire Blvd., Ste. 1601, South Tower, Los Angeles, CA 90010) and mark Triple It! in the memo section. This offer expires December 31, 2007.

How does Triple It! work? Our donor has partnered with a corporation, each matching your gift. So $25 becomes $75, $50 becomes $150, $100 becomes $300up to $5,250 will be matched by the donor and up to $5,250 by the corporation, so we can turn your combined donations of $5,250 into $15,750.

But we cant do this without you, our members and friends. Together we can seize this wonderful opportunity: please donate to the Triple It! Raising Awareness campaign between now and December 31, 2007. Your tax-deductible donation will be recognized in the next Loose Connections, and you can feel good knowing youve helped get out the word about what its really like to live every day with EDS.

New Office ManagerFirst anniversary of The HingeStarted quarterly PAN HingeAdded six new members to PANTaxicab tops, San DiegoABC specialProduced and shipped EDS MRGDental MRGAcquired Purdue Pharma grant to produce Pain Management MRGIntroduction of EDNF Kids and Teens program/newsletter: Carepages, Volunteer Service of America programReorganization of the website, expansion of boards and medical articles, glossaryHuman Race, Marin County, CAHuman Race, Greensboro, NCSunburst 1000, MichiganPlanning for MRG program, Baltimore, March Planning for 2008, Los Angeles, September Completion and publication of two EDS studies funded by EDNF

Conference Participation:

American Academy of Dermatology, Annual MeetingAmerican College of HematologyAmerican Osteopathic Association, National MeetingChronic Fatigue Association, PANDORACoalition of Skins Diseases, Development Day Dermatological Nurses Association, Annual MeetingImmune Deficiency Foundation, National Conference Internal Medicine/American College of Physicians Society for Investigative DermatologyUS Psychiatric Congress

EDNF 2007HIGHLIGHTS

L O O S E CONNECTIONSPAGE FOUR WINTER 2007

although I write this the week before Thanksgiving, you will read it in December and we will be looking at 2008. Doesnt it seem that just yesterday everyone was worried about Y2K? Time flies, whether we want it to or not. Every day we move toward our future; and I believe we can affect how that future can look every day.

The experience of Ehlers-Danlos is a tough one: there is not a single gene, a single type of doctor or standardized regimen for treatment, there is no cure. There is no national EDS center housing genetic, diagnostic, or therapeutic specialists and researchers. Patients

are left to fend for themselves against uniformed physicians and insensitive administrators, insurance companies and social agencies that seem perplexed or simply incompetent. Parents struggle to advocate for their children, or to discover what has been ailing them for decades, some are suddenly confronted with a devastating loss. For many, a diagnosis is a mixed blessing;

it legitimizes their medical experience, but offers little for hopes of a cure or significant intervention.

How do we change that? Presumably you have become a member of EDNF to request, offer and share information, resources, support and hope; to be part of a community who gets it, who understands the challenges, the set backs, and the wonderful surprises that now and again occur. In the last three years, I have seen the EDNF community grow in many ways: the openness and welcome to new members; the increase in knowledge, understanding and compassion for each other; the growing awareness that EDS is real, and is important to more people than we thought. Our Professional Advisory Network has some of the best EDS practitioners in the US, and we are attracting international attention our reach into the healthcare community grows daily. This is all quite exciting, but we have a long way to go.

The path is clear and the opportunities to continue this growth and improvement are within our grasp. It is the collective voice of EDNF that the healthcare communities, the donors and funders and your communities hear; your membership is important for more than access to the website, it tells the world you care enough to unify and demand the changes you need and deserve.

The way forward is to support those who want to support you your local group leaders have stepped up to be the face of EDNF in the community and to help this organization get the attention you require. The way forward is to speak up and to speak out. Dont just attend the conference; be part of its architecture by volunteering. EDNF is creating the resources that can help this mission but it is you, each and every one, that has the power to make that message stick.

I believe that each of you has the power to make today and tomorrow better for yourselves, and so much better for those who follow behind you. Your voices together are strong and powerful, you can affect change, starting today. Together you can fight ignorance, intolerance and insensitivity; all you need to do is choose how you will be part of this voice.

Tomorrow holds much promise, be part of the change, let 2008 be one of the best ever for EDNF and everyone who must walk the path of EDS.

THE WAY FORWARDBY CYNTHIA LAUREN, CEO

Each of you has the power to make today and tomorrow better for yourselves, and so much better for those who follow.

The greatest use

of life is to spend

it for something

that will outlast it.

William James(1842 -1910)

L O O S E CONNECTIONSWINTER 2007 PAGE FIVE

as my time as Director of Local Groups for EDNF draws to a close, I have thought a lot about the growth and the changes that have taken place over the past five years. I have thought about the Local Group Leaders, past and present, and how valuable the time is that they voluntarily give to help other people with Ehlers-Danlos syndrome to help them get through the days a little easier, as they deal with the frustration, limitations and pain of EDS, knowing that they are not alone in the struggle.

I leave this position possibly even more passionate about the benefit of local groups than when I began. I took the position of Director of Local Groups because I did believe in their

benefit and how important they could be to EDNF and to EDS patients all across the country. As Director, I have talked to so many people who, like me prior to learning about the Ehlers-Danlos National Foundation twelve years ago, did not know that there were others dealing with the same kinds of medical problems of EDS. The joy and relief expressed by these individuals and families in learning that there were people in their very own communities who understood and whom they could talk to about the experiences of EDS has been extremely powerful. Each individual I talked with reinforced the knowledge of the vital role local groups play in giving support to those living with EDS, spreading knowledge of EDS to medical professionals, schools, and

CHARLOTTES FAREWELLAS DIRECTOR OF LOCAL GROUPSBY CHARLOTTE MECUM

local governments, and increasing awareness of EDS to all parts of our country and worldwide. EDNF cannot do this alone.

It is my hope that EDNF local groups will continue to grow and flourish; that more and more people will see the importance and the need for local groups and will be moved to volunteer their time to organize and lead them in areas where none now exist.

Thank you for the opportunity to have worked with so many dedicated individuals and to have served in the mission of EDNF in a way that I found so gratifying. I look forward to continuing to carry out the mission of EDNF in a new capacity.

DEcEmbEr 31st will mark the end of terms for board members Dave Specht and Richard Blouse.

Mr. Specht joined the Board of Directors in the summer of 2001 and served as a Director at Large, Vice Chair and Chairman of the Board 2006-2007.

Mr. Specht brought to the Board of Directors years of business experience and added a new perspective to both the board and the Foundation as a whole. He was able to guide the Foundation through changes that lead the organi-zation to one which reflects a business and corporate structure. The Jordan Specht Memorial Golf Tournament and the efforts of the Specht family have provided significant financial support to the Foundation and allowed EDNF the opportunity to continue its work and

develop programs that may not have otherwise been realized.

The Board of Directors and EDNF would like to thank Dave for his willingness to serve, guidance, and support for the Foundation as it continues to achieve its goals and vision.

Thanks go to Richard Blouse as well for his service on the Board of Directors.

Mr. Blouse brought to the board his experience of 35 years in organizational management and offered multiple resources to both the board and the staff of EDNF. Dick joined the board in 2005 as a Director at Large. The following year Blouse served as Treasurer and Chair of the Finance Committee, assisting with the financial aspects of EDNF.

BOARD OF DIRECTORS CHANGES FOR 2008BY ROBIN COPPI, RN, BSN CCRN, IMMEDIATE PAST CHAIR OF THE BOARD OF DIRECTORS

It has been a sincere pleasure to serve with these gentlemen and the Board of Directors wishes to thank them for their time and commitment to the Foundation.

Michele Darwin has joined the Board of Directors for 2008. Mrs. Darwin serves as the Chair of the Kids and Teens program. She established this program seeing a need within our membership, and has raised funds to support the Foundation and the program. Currently, Mrs. Darwin is working with the Conference Planning Committee to ensure appropriate educational activities for Kids and Teens at our upcoming conference in Houston.

The Board of Directors welcomes Michele Darwin and looks forward to a successful year.

L O O S E CONNECTIONS

A S K T H E D O C T O RPAGE SIX WINTER 2007

The Ask the Doctor series continues to seek answers to our members questions and concerns. PAN member Terry Olson spoke to doctors and membership at the 2005 EDNF conference in Los Angeles. The transcript of that presentation and PowerPoint can be found on the website. His article was published in Loose Connections, Winter 2005. Thank you for again stepping up to the plate to answer our concerns. Ed.

Question: Are there exercise guidelines for the hypermobile type of EDS as well as the hypermobility issues in other types? Please share information regarding frequency, duration, and intensity?

Exercise is very appropriate, and necessary, for treatment and management o f j o in t hypermobility. There are a number of ways to initiate exercise, but the choice of exercise should be predicated on whether pain is a factor, the extent of the hypermobility, the effected joints, etc. Consultation with a physical therapist, specifically a therapist trained in manual therapy, is helpful to determine the most appropriate exercise.

Exercise should not be excessive trauma to already stressed tissues, so emphasis on exercise with decreased joint loading, such as pool, total gym, bike, can be helpful. When exercising with weights, I advocate working the muscle in its shortened range of motion, and only through a decreased portion of the range. An example of this would be when doing a simple biceps curl. When you start with the arms fully extended, the muscle is in its lengthened range. This position puts the muscle in its weakest position, thereby creating greater stress on the muscle, its tendon insertion, and the underlying joint structures. When you continue to bend the elbow completing the biceps curl you move into the shortened range of motion for that exercise. In this range, the muscle has its greatest strength. In this position of the exercise, there is less stress on the muscle, its tendon insertion, and the underlying joint structures. All exercises can be modified to exercise in this range of decreased stress and loading. Rest is as important as exercise, so you should provide a days rest between exercise periods of any intensity. Typically, you can lift weights three times a week, with a days rest in between exercise days.

There is a PowerPoint presen-tation on the EDNF website that addresses many of these exercise principles, with photos of some sample exercise setups. These are generalized comments on exercise, with closing emphasis on the necessity of individualized modifi-cation of any exercise program. The exercise program should be modified to the individual so that

exercise can be stressful enough to promote changes in strength and aerobic capacity, but performed in a range of motion that is not promoting increased pain after having completed the exercise.

Question: If a joint is subluxed or dislocated and you exercise are you doing damage to that joint?

Yes. This relates back to previous question regarding importance of exercise. The individual with history of joint subluxation can exercise, but the exercise needs to be performed in a range of motion where joint stability is occurring. This may be only a very small range of motion exercise. Exercising in the range where subluxation is allowed to occur, will lead to breakdown of the joint, the surrounding joint structures, as well as increased pain.

Question: Is stretching appropriate for hypermobile patients, if not is there an alternative exercise? What is the best exercise for muscle spasms?

In my experience, I do not teach stretching of the joints for patients with joint hypermobility. Stretching out structures that already exhibit greater than normal mobility seems counterproductive, as well as leading to increased hypermobility and pain. Muscle spasms occur as the body attempts to stabilize an injured or unstable area. Strengthening of the supportive structures around the joint, i.e., the musculature, has the benefit of enhancing the stability of the joint and ultimately decreasing the incidence of muscle spasms.

L O O S E CONNECTIONSWINTER 2007 PAGE SEVEN

EDNF TEAMS WITH BEYOND BIPOLAR

on October 11-13, EDNF, represented by Cynthia Colabella of the Central Florida Local Group, teamed up with Jane Mountain, MD, author and publisher, to share a booth at the US Psychiatric Congress held in Orlando, Florida. Collaborations like this help our organization become strong and open doors to spreading our message and helping to fulfill the mission of EDNF.

Having a booth at a national conference takes more work than one might think. Donations from local groups and EDNF members throughout the country, along with sharing the costs of the exhibit booth allowed for the required registration fee.

It also helped that Cynthia, who lives in the area, was willing to staff the exhibit booth, thus eliminating the cost of lodging and travel.

The first task was to make the booth eye appealing for all. Cynthia decorated the EDNF portion of the booth with white and black zebra fabric, EDNF Tee Shirts and a stuffed zebra. Dr. Mountains book covers delineated her half.

EDS is truly a zebra to conference clinicians who are looking for the

horses of psychiatric illness. Cynthia networked and made EDNF literature available to the 2,500 attendees of the conference, and Dr. Jane Mountain presented and sold her two books, Bipolar Disorder: Insights for Recovery and Beyond Bipolar: 7 Steps for Wellness. Even though Ehlers-Danlos syndrome and bipolar disorder are not related, the sharing of the booth was advantageous for both EDNF and Dr. Mountain.

The result of EDNFs presence at this Conference was success. Many attendees stopped at the booth because they were looking for resources, or to learn what Ehlers-Danlos Syndrome is. Hundreds of physicians and individuals were educated about EDS and were introduced to our Foundation.

From her experience representing EDNF at this conference and at others before, Cynthia offers some pointers to other local groups that might want to provide a similar service at a conference:

Save money by teaming up on booth rental with another organization or exhibitor.Be aware of possible costs like table and chair rental and parking.

Allow plenty of time to set up your booth. Decorate your booth so it is attractive and draws visitors.Provide plenty of volunteers for your booth so they can take turns and get adequate rest while working the show.Enjoy the chance to share what you know with others and increase awareness and education about EDS/EDNF.

Thanks so much to EDNF, the members and local groups, especially New Mexico Connects Local Group, Cynthia Colabella and Dr. Mountain for making possible the exhibit booth at the 21st Annual Psychiatric Congress and the educating of members of the psychiatric profession about EDS.

If you would like to learn more about Dr. Mountain and Beyond Bipolar, go to her website at www.BeyondBipolar.com.

To continue to help make a difference for EDNF patients and families, please visit our website www.ednf.org, and ask family, friends and co-workers to join EDNF. Every membership provides support toward reaching the common goals we work so hard to attain.

L O O S E CONNECTIONSPAGE EIGHT WINTER 2007

Each year for the past six years, the EDS Sabal Foundation has hosted a fundraiser to support the work of EDNF. These fundraising events were inspired by Aaron Sabal who was diagnosed with EDS at the age of two. He continues to be our inspiration and motivation to help all of those that have any form of EDS.

The EDS Sabal Foundation was formed by Aaron Sabals family in January 2002. We held our Sixth Annual Fundraiser on September 14, 2007, at Carriage Greens Country Club in Darien, Ilinois. It included golf and dinner, as well as live and silent auctions. We were again fortunate to have 120 golfers to whom we were able to speak about where EDNF has come from, and, because of our help, where it is going. We hope to continue to build on our financial success and educate the public about EDS.

We are very proud of our support for EDNFs mission of raising awareness and funding research.The EDS Sabal Foundation has donated over $180,000 in the last six years. We hope others will join us in the future and help us continue this vital mission by creating fundraising and awareness events all over the country.

SABAL FOUNDATIONSSIXTH ANNUAL EDNF FUNDRAISERBY JEANNE KINGSBURY

Without the help of these special people, the event would not have been a success. Special thanks to: Bill Kingsbury, Tom & Lori Sabal, Mike & Gisela Sabal, Tim & Janine Sabal, Liz Beaman, and Pat & Al Sabal. Also, special thanks to all of our volunteers that helped run the event.

L O O S E CONNECTIONS

impressed that our website has additional information for physicians, support for patients and family members, and they plan to use this resource.

A few of the students were taking connective tissue classes and one of the conference seminars mentioned EDS. The students were inquisitive and asked good questions. They promised to remember the Zebras! We have great hope for the next generation of MDs and DOs to be more aware and knowledgeable about EDS.

We have written the Osteopathic Association, telling them of the positive response from the doctors and how much AOA helped us increase awareness. The association thanked us for being there; our experience was very positive and one we cannot wait to repeat.

WINTER 2007 PAGE NINE

gracE Berardini, Terri Keyes and I held an EDS Exhibitors Booth at the 112th Annual American Osteopathic Association conference here in San Diego. We were the only non-profit among the AOA booths, which included hospital recruiters and pharmacy reps. All types of physicians attended, including dermatologists, emergency physicians, psychiatrists, n e u r o l o g i s t s , p a t h o l o g i s t s , pediatricians, rheumatologists, pain management, schlerotherapy and sports medicine. Students, interns, residents and interns were also there.

The physicians were given the opportunity to receive three CMEs by visiting each exhibitors booth and getting a sheet signed. This gave us a wonderful opportunity to reach many more doctors than we normally would have. The first day was non-stop and we quickly adopted Terris opening line Are you familiar with EDS?

as we slowly initialed their sheets! If they said yes, we asked whether they had a patient with it. Many said they had never seen one, which led us to share that 80% of people with EDS are not diagnosed. Several doctors said, I believe it. Our experience is the doctors get more receptive every year, wanting to know how to diagnose and treat EDS. Once again, we met several DOs with EDS and some with patients who have EDS! Thanks to our Information Board that Terri Keyes and Grace Berardini put together, we have the top ten signs of EDS to draw them to. It also has important info on the vascular type and photos of hypermobility and our youngest local group member, 18-month-old Chloe.

The physicians were very happy to receive the new MRGs and the Facts brochure. Some told us they were not aware of the EDNF web site and didnt know Ehlers-Danlos had its own Foundation. They were

LOCAL GROUP OF GREATER SAN DIEGOAT AMERICAN OSTEOPATHIC ASSN. CONFERENCEBY LANI WILSON

L O O S E CONNECTIONSPAGE TEN WINTER 2007

During the last three years, EDNF has gone through aching changes. When I started here in 2004, our Foundation was confused about who we wanted to be, and how we were going to share our message to the nation and world. But as we have slowly moved from coffee table to conference table, EDNF has grown from a small group reaching out for comfort into a nationwide network of patients, families, caregivers, doctors, nurses and therapists. We are all dedicated to telling the world that EDS is real, that it has real effects and consequences and it deserves more than a sympathetic ear and shoulder. The message must be shouted out: we are here, and we matter!

Still we find many who have never heard of EDS, and many more who simply dont care. If EDS were contagious and people were afraid of catching it, awareness would be far easier to achieve. But how do we engage the healthcare community, our social agencies, our schools, who simply arent interested in the face of so many health crises? While it is easy to fault an insensitive nurse or an uncaring doctor, and sadly there are more than a few of those, most are dedicated to helping patients and want to learn and know more. How can you, how can we, make that happen?

It happens when the fight for awareness becomes personal. Every doctor and nurse you meet can be another professional that is aware of EDS, every person you know can be another face for EDS. When we take the fight personally, when

we make EDS matter in the lives around us, we make it tangible and meaningful to those around us.

It is up to you to make EDS matter. This is your life, the lives of your family; no one can do this for you. There is no magic, there is no white knight, there is no one who cares more than you, and no one to whom it matters more. Make awareness happen.

All it takes is one little thing; whenever you can, take one step outside yourself to reach someone else. That one little thing makes EDS real and important because that someone met you. Speak out. Share the strength of your story and struggle.

Instead of keeping Loose Connections in a drawer, share it with someone else. Dont save the MRG or give it to your doctor who already knows you, give it to someone new at that clinic, at that office, at that practice. Forward The Hinge to your clinic and school nurse, leave a sports poster for the P.E. instructors and coaches. Carry brochures with you and drop them in waiting rooms. When you visit a hospital or medical office, leave something behind a General Brochure, an MRG. When youre sent to a new lab, dont go empty-handed.

So many angry patients e-mail or call me, frustrated that their medical staff have never heard of EDS, much less have any idea how to help. But each negative encounter is a missed opportunity to make a difference; not only for you but for every EDSer those professionals may see and will

treat. No, they may not be expecting you, but you can anticipate what they will need to understand. Be prepared before you go; expect to be the unexpected and know how to answer their questions. Help them help you, and you help everyone.

You must be a community of EDSers, not divided according to type and competing with each other for who is most worthy, who is most needful. You are all worthy of compassion, understanding and healing, we need to make progress together. When you are separate and possessive, your voice is weak and the urgency of EDS education is lost. You share a common disorder and a common desire.

EDNF is to be shared among all who care and want change. While the Foundation can provide structure for this cause, while we can educate, provide information on treatment and research, it is each of you who make EDS matter. You have the ability to make your world a bit better, not just for you but for everyone else after you. You have the power to strengthen yourself and EDNF simply by spreading the word.

Awareness cannot, and will not, happen without each of you. Make awareness happen.

WHY DOES E.D.S. MATTER?BY CYNTHIA LAUREN, CEO

L O O S E CONNECTIONSWINTER 2007 PAGE ELEVEN

almost every day I receive an e-mail or phone call from a distraught person who has chronic connective-tissue problems. Some folks have diagnosed themselves with EDS, but they are looking for validation. Some have been diagnosed with EDS, but their physician doesnt know which type. And some have been definitively diagnosed with a specific type of EDS, but their doctor states that he doesnt know enough about EDS to treat them.

Tha t s why our L ea rn ing Conferences are so critical for everyone who currently has EDS; as well as our children, grandchildren, and friends who might have this devastating disorder in the future.

My first EDS Conference was in 1991, in Seattle, Washington. I was diagnosed with Vascular EDS a year before and went alone because I didnt know another soul who had EDS and no one could go with me. A slew of family members mother, grandfather,

aunt, uncle, cousins had died from ruptured aneurysms at 1355 years of age. I was not going to let that happen to me. And I wasnt about to let my two teenagers die prematurely.

So I cut coupons, watched for rebates, and worked extra hours to save enough for the Conference fee and airfare. Thats where I first learned about beta-blockers, beta-blockers that I believe extended my life and my childrens lives. I also met numerous friends who were just like me and just as scared.

My life had new meaning and precious hope.

This year when you consider whether to go to the 2008 Conference, July 31August 2, 2008 in Houston, Texas, consider the following points:

You will receive the latest updated information about EDS from experts in the field.You will help the physicians learn from REAL EDS patients.

REFLECTING ONE.D.S. CONFERENCESBY MICHELE HEGLER, E.D.N.F. CONFERENCE DIRECTOR

2 0 0 8 C O N F E R E N C E F . A . Q .

You will hear about the latest studies and how to get into them.You can ask doctors specific questions without the $200 office visit fee.You will meet the dearest, life-long friends.You might connect with a doctor who lives in your area.Youll be helping every future EDS person to have an easier time than youve had.

And theres no price tag you can put on these benefits.

I hope to see you in Houston!

Q: What does the Conference fee cover?

A: Access to all the medical, CEUs, enrichment, and interactive sessions; all your food except Friday evening; your goodie bag; entrance to the Opening Reception, Awards Banquet, vendor rooms, and silent auction; access to massage beds and hospitality room and

snacks; and enrollment in Teens & Kids Programs.

Q: What CEUs are offered?

A: We have applied for 1214 Nursing and Physical Therapy CEUs.

Q: Is the hotel included in the price?

A: Unfortunately, no. In fact, the Conference fee barely pays for

the actual meals you eat. But the Renaissance Hotel has given us the great rate of only $109/night. Just call 713-629-1200 and ask for the EDNF rate. We also have some persons who want to share a room. If you would like to do this, contact Lani Wilson at B84L223@AOL.COM.

CONTINUED

L O O S E CONNECTIONSPAGE TWELVE WINTER 2007

SPOT L IGHT ON SP EAKERSAlthough we feel that every speaker at the Conference is an expert in their fields, and one you dont want to miss, we want to highlight a couple just to whet your appetite. We will include more speaker bios and session synopses in the next issues of Loose Connections and The Hinge. We will also post them on the EDNF Conference website: click 2008 Conference at the top of www.ednf.org, and then choose Speakers.

2 0 0 8 C O N F E R E N C E F . A . Q .Q: Will there be childcare?

A: No. This year we have developed a comprehensive Kids Program (4+) that will have sessions at the same time as the adults and the teens have. Kids and teens have a reduced conference fee and will eat with their parents.

Q: What things are needed for the Silent Auction?

A: Homemade items and sports memorabilia are great items. Special pillows, splints, massage oils, and other new items to help the EDS person also do quite well. Some groups are making baskets of items from their neck of the woods. Please make certain that your

item is clean and ready for sale before shipping. Contact Angel Denardi at NMCONNECT@YAHOO.COM for more details.

Q: Can I provide a scholarship for a loved one?

A: Absolutely! Conference fees make an excellent gift. You can order a card from Judy Sobel at JCS123@COMCAST.NET and then

Joseph S. Coselli, MD, FACC, PhDEDNF PAN Member

Dr. Coselli is Chief of the Division of Cardiothoracic Surgery and a Professor of Surgery at the Michael E. DeBakey Department of Surgery at the Baylor College of Medicine. He is also the Chief of Adult Cardiac Surgery at the Texas Heart Institute, and is the Associate Chief at the St. Lukes Episcopal Hospital in Houston. Having performed more than 2,000 abdominothoracic aneurysm repairs, he is interna-tionally acclaimed as the worlds most successful surgeon in this field.

Dr. Coselli has demonstrated a commitment to patients with connective tissue disorders, such as Marfan Syndrome and EDS. He is a long-standing member of the Professional Advisory Board of the

National Marfan Foundation, and in 1997, was awarded the Marfan Award for his outstanding contributions to the development of Cardiovascular Surgical interventions and care for people afflicted with connective tissue disorders. In 2001, after presenting a summary of his 15-year experience in abdominothoracic aneurysm repairs in Marfan patients at both the VIII Aortic Surgery Symposium and the Fall Surgical Society meeting, he was awarded the Michael E. DeBakey Research Excellence award for his contributions. His ongoing research has provided critical information worldwide to medical professionals who operate on patients with friable tissues.

Nazli McDonnell, MD, PhD EDNF PAN Member

Astute, talented, and personable, Dr. McDonnell has devoted the past four years to researching EDS, Marfan Syndrome, Sticklers, and similar genetic disorders in her cutting-edge National Institute of Health: projects: Clinical and Molecular Manifestations of Heritable Disorders of Connective Tissue, Cerebrovascular Aneurysm: Identification of Relatives at Risk and Familial Linkage Studies, Characterization and Mapping of a new Connective Tissue Disorder with Features Overlapping Those of Ehlers-Danlos, Marfan, and Stickler Syndromes, Mutational Analysis in Stickler Syndrome, and Mutational Analysis in Ehlers-Danlos Syndromes.

Of particular importance are her latest findings concerning EDS, including the incidence of autonomic dysfunction; spine, endocrine, and lipid abnormalities; sleep disturbance; bone density; and most exciting: the discovery of an EDS-similar connective-tissue disorder.

To accomplish great things, we must not only act but also dream, not only plan but also believe.

Anatole France (1844-1924)

L O O S E CONNECTIONSWINTER 2007 PAGE THIRTEEN

2 0 0 8 C O N F E R E N C E F . A . Q .

Were gearing up for another fabulous EDNF Learning Conference, July 31August 2, 2008 at the Renaissance Hotel, in Houston, Texas. You probably thought we couldnt top the extraor-dinary list of speakers and topics from the 2006 Conference, but you would be wrong. The 2008 Conference promises to be the best one yet. Although we have several months to confirm all our speakers, here are a few of the early medical session confirmations.

CONFIRMED SPEAKER SESSION NAMES

Patrick Agnew, DPM, Podiatry Your Feet and EDS

Joseph Coselli, MD, FACC, Surgery Cardiothoracic Surgery in High-Risk Patients

Dianna Driscoll, DO, Therapeutic Optometry Your Eyes and EDS

Joseph Ernest III, MD, OB/GYN Pregnancy Issues

Henri Marcoux, DO, Chiropractor Chiropractic Therapies for EDS Patients

Nazli McDonnell, MD, PhD, Genetics The Latest in EDS Genetics Research

Elizabeth Russell, MD, Rheumatology The Role of the Rheumatologist in EDS

Brad Tinkle, MD, PhD, Pediatric Genetics Sleep Disturbance and Management in EDS

John Trowbridge, MD, Pain Management Prolotherapy for Pain

Denise McGinley, RN Nursing Tips for the ER

James Grotta, MD, Neurology Interventional Radiology

HOT TOPICSTOP-NOTCH SPEAKERS

Invited SpeakersPeter Byers, MD, PhD (Genetics Testing)Edith Cheng, MD (OB/GYN) Jodi Danna, DDS (Dentistry)Clair Francomano, MD (Human Genetics)Dianna Milewicz, MD, PhD (Vascular

Complications)Anna Mitchell, MD, PhD (Human Genetics)Terry Olsen, PT (Physical Therapy)Melanie Pepin, MS, CSV (Genetics Testing)

Peter Rowe, MD (Pediatrics: Chronic Fatigue Syndrome and EDS)

Steven Schwartz, MD, FACC (Gastroenterology)

Ulrike Schwarze, MD (Genetics Testing)Marcia Willing, MD, PhD (Pediatric Genetics)Mike Yergler, MD (Sports Medicine) Still needed (Psychology, Orthopedist, Pain

Specialist)

In addition, we have scheduled Social Security representatives and lawyers, service dogs, diet and nutrition, and Total Body Recall Stay-Fit sessions.

ambassador

Conference Kids & TeensNoun: a person who acts as a representative or promoter of a specified activity

How would YOU like to be our representative at the 2008 Conference by acting as an Ambassador? We are looking for enthusiastic members (under the age of 18) to serve as our official Ambassadors. It is a special opportunity for you to act on behalf of EDNF, open to six of our younger members. If you are chosen, you will receive a special packet and credentials as well as special t-shirts to wear in Houston. Early in 2008, we will have on-line chats as a group to plan together for the various roles you will play at the conference. If you are currently attending a school that requires community service hours, we will verify your hours as part of this project. To apply, please contact EDNF Kids & Teens by emailing EDNFKidsandteens@mac.com or by calling Michele Darwin at (972) 208-2651.

ambassador

give it to your special person. If you want to do it anonymously, you can pay by credit card and we can send the card to the person and address you specify.

Q: Can I make a donation to the Conference fund?

A: Of course. I love these questions. Just send a check or

credit card info to EDNF, 3200 Wilshire Blvd, Ste. 1601, South Tower, Los Angeles, CA 90010 and designate it as Conference Donation.

Q: Can my doctor speak at the Conference?

A: Possibly. We would need a CV or resume and suggested topic. All speakers must be approved

by the Conference Committee and the BOD.

Q: What is the Spirit of Togetherness Challenge (SOTC)?

A: Last year, In order to raise funds and have friendly competition between the groups, we initiated the SOTC. The group with the most

CONTINUED

L O O S E CONNECTIONSPAGE FOURTEEN WINTER 2007

2 0 0 8 C O N F E R E N C E F . A . Q .

RichaRd Le Gellienne was quoted as saying, Stay the course, light a star, change the world whereer you are. Across the board at EDNF we work daily to stay the course. The programs we are working on and developing for the youngest members are no exception. As we continue to stay the course we continue to have more and more exciting things to announce.

The thing that we are most excited about right now is the comprehensive sessions we will be offering at the conference. There will be sessions geared just for Kids & Teens. Along with sessions on adapting your special needs in the school setting, maintaining your positive attitudes while struggling with EDS and coping mechanisms (to name a few), we are also pleased to announce that a couple of the wonderful speakers have offered their time to sit down in interactive sessions with our youth.

There will be some changes that we want you to be aware of, too. In order to allow the kids and teens the opportunity to be open and honest with their feelings, we are limiting the sessions to kids only. Many children have asked for this and we feel there is great value and want to honor their request. There will be comprehensive printed material for each session that will be distributed to both kids and their parents, but this year there will be no parents in the sessions only adult committee volunteers. All sessions will be age appropriate. In addition to the sessions, we also have some fun things to look forward to like a pizza party!

The sessions for Kids & Teens are separate from any baby sitting services that will be available. Look for more information in the Spring issue of Loose Connections.

Its a Great Time!

EDNF would like to congratulate all of our young members who are working on awareness issues in their communities. Collectively, they are each doing their part to make a difference. We have members raising money through FirstGiving, teaching their school teachers and nurses about EDS, proudly wearing zebra prints around town, collecting used cell phones, selling lemonade, participating in Triathalons and of course educating their own physicians about Ehlers-Danlos syndrome. Sometimes I am sure the easy thing to do is sit back quietly and try not to be different. However, the things that make you different are the things that make YOU. You are PURE potential!

donations won an award. This year we will give more prizes. And every group which donates at least $25 will earn a star on the prestigious Walk of Fame. Contact Lisa Schoenberg at LISA.CHERRY2SKY@GMAIL.COM for more details.

Q: I know a vendor who might want to rent a booth. Whos in charge of this?

A: Gracie Berardini is in charge of the vendor booths. You can contact her at GWRANCH@COX.NET. This is the best way for vendors to get more customers, help the cause and get oodles of publicity.

Q: Who is handling sponsors?

A: You can contact Michele Hegler at MICHELE.HEGLER@SBCGLOBAL.NET for more details.

If you have additional questions, address them to Michele Hegler at michele.hegler@sbcglobal.net.

L O O S E CONNECTIONSWINTER 2007 PAGE FIFTEEN

Rebecca Rengo-Kocher, MA, MSW, LCSW, ACSW, is a coach, psychotherapist, speaker and educator with over 25 years of experience. She is the president of the Missouri Pain Initiative and author of Beyond Chronic Pain: A get-well guidebook to soothe the body, mind and spirit. Rebecca has lived with chronic pain for 33 years.

its easy to feel overwhelmed when you live with chronic pain. Every day life can be a struggle that seems impossible to overcome. You push yourself with every ounce of energy right down to your soul, and it feels like nothings there. Simple activities that others take for granted can be a laborious undertaking, like sitting to watch a child or grandchilds little league game, going grocery shopping or trying to concentrate during a meeting.

Its especially frustrating when family, friends, even doctors and nurses tell you that you should be feeling better, youre not trying hard enough, youre addicted to pain pills or that youre just a complainer. Exhausted, depressed and hurting, you just want to feel better.

To take back control of your life, stay hopeful. Keep moving forward. Life can be enjoyed and lived well. Start with these basic steps:

You are your first priority. Many people feel guilty doing this, but its selfish not to. The better you feel, the better you are able to be with those around you. So ask yourself, what makes me feel better, happier, and more content with my life? Then make sure to schedule time for what you need every day. Quiet time is a must, whether its through meditation, prayer, taking a walk or reading. Sometimes it seems that everything desirable is out of reach. Think of activities you might be able to manage, even on your worst days. Is it a bubble bath, looking at magazines, getting a massage? There

is something for everyone everyday. Take care of your emotional needs, too. Validate yourself and surround yourself with positive, supportive people as much as possible.

Accept where you are right now and whatever feelings you may have. Do not fight against your situation or your feelings. This will only hinder your recovery. Accepting things as they are brings feelings of peace. Identify where you are in this moment and how it feels. Just as someone on a diet needs to know his or her starting point, its important to pay attention to your starting point each day.

Set reachable, realistic goals. Focus on what you can do now and celebrate every small accomplishment. Pace yourself! Resist the temptation to overdo on a good day. That can start a downward pain cycle. By pacing yourself, you will gradually increase your good days and begin to feel more normal. Youll start to develop stability.

Dont minimize your achievements. Feel proud of whatever you can do and dont compare yourself to anyone else. Many times, just making it through the day is a big accomplishment. Give yourself a pat on the back. Encourage and congratulate yourself like you would a best friend.

Use positive self-talk frequently throughout your day. Are you criticizing yourself in your mind? Replace these thoughts with encour-agement and kindness. Tell yourself what a good job you are doing. Dont hold back. Your emotional well-being and state of mind have a profound impact on your energy and pain. Lift yourself up.

Think through what is really important. Focus on what makes

you feel better. If you are involved in activities or situations that make you feel worse, try to avoid them. If you cant stop right away, work to limit your involvement and make a plan to stop. You are your own best advocate.

Be empowered. This is your life. Talk to your doctors and other health professionals about your goals. Write out questions and get information. Keep a file on yourself. Ask for help from others when needed. Join organizations to advocate with others. Face your fears. Stay open to all possibilities, but trust your own judgment. Do what you feel is best for you.

Most importantly, LOVE YOURSELF to help heal. Decide what is right and good for you. Replenish before giving. Take responsibility for meeting your own needs, emotionally, physically and spiritually. Do not feel guilty for needing different things than other people. What may seem like pampering may be what is needed to feel your best. If others dont understand that is their issue, not yours.

Just implementing one or two of these steps consistently can have a positive, profound effect on decreasing your pain and increasing your energy. Believe your health and your life can be better. It doesnt happen overnight, but if you take good care of yourself and practice these positive steps, it will make a difference. Your pain is real. How you live with your pain is something you have control over. Start small. Dont worry about your progress or speed, just keep moving in the right direction. A life with chronic pain can be a life enjoyed and lived well. It starts with one step. You are not alone.

HOW TO LIVE WELL WITH CHRONIC PAIN:STEPS YOU CAN TAKE TODAYBY REBECCA RENGO-KOCHER, MA, MSW, LCSW, ACSW

Lift yourself up.

L O O S E CONNECTIONS

onos, emoas &buteListings as of November 16, 2007. Triple It! donors will receive special mention in Spring 2008.

Arlene AbbottMaureen AbernathyJenine AdamsRobin AdmanaClaire AgeeAlabama Group EDNFAmerican Automobile

AssociationAmericas CharitiesJack & Rena AppelJulia ArayaZoe AshcraftAT & T United Way

Employee Giving Campaign

Susan AtkinsCharles & Judith AylwardPamela BadikDonald & Basha BaermanNoah BaermanGeoff BakerJoan Baker-GernerDiann BankBarbara Howe

Vaccine GroupDennis I. & Sharon

S. BardashWalter & Gloria BarrettKeith & Laura BartlettRonnie BasshamDavid J. & Carol R. BassoRobert BatesonRobert BaylessStephen BeegleGary BehlerJerome & Cheryl BensonGrace BerardiniLilly BerenySusan BergerCarl & Lorraine BergstromJohn E. BergstromBerman for CongressLynn Starling BiddlecomeBrock & Suzanne BirdsongCourtney C. BirkelNatalie BirrellMichael & Kimberly BishopKaren BlackwelderJeffrey Michale BlilieFred BlumMoreen BlumSteven BolefCandyce BollingerIris BonnettBetina BoserupAlice BradyTimothy BradyStephan & Nancy BraunElizabeth Ann Bray

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Nonprofit LeadershipL. Dan & Pamela L. ChaneyCarole ChapinTalia ChavesRobert & Ann ChestermanCheryl ChiversPolly A. CiminoColin ClarkeJeanne ClevelandDiana CliveCody Glickman FamilyRhoda CohenSharon CohenCommunity Foundation

for Southeast MichiganCommunity Health CharitiesJack & Louise ConieConstellation Energy GroupSharon ContiniBrian CookTheresa CookNell CoppiRobin & Steve CoppiRobin CoppiTim CourneyaLinda CraseVirginia CrawfordMegan CunninghamVirginia CurranCut Check Writing

Services Inc.Mary DanielsMichele DarwinScott DarwinDavid & Lynne Moore

and FamilyMarian DavisShirley DayDC Metro GroupMartha de La SoujeoleDeacon Charitable

FoundationMichael Dean

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McCarraher LennonEDNF San Fernando

Valley BranchEDNF WNY BranchEDS Chapter in

Doylestown PAEDS Sabal FoundationEhler-Danlos National

Foundation Atlanta Area Group

Frank EisenmanMargaret ElfHoward & Helen EllisWilliam & Faye EllisonShirley EmmersonDavid & Karen EvansF. BatchelorF. McDermottF.E. GiddyAbraham FarberCraig & Mary FellowsSeymour Darlene FerleyAngelia FernandezDale & Flora FerrensFidelity Charitable Gift FundJames & Pamela FishJack FishmanCazzane Marie FittererCatherine FloydEmma & Franz FogtMargaret FooteYetta Forman Carol Davis ForshayCidny FoxJohn FragalePatricia FraleyLee FrankPatricia FranklinDanielle FreeburgBarron FreeburgerKim & Bruce Freedman

Gwen FreemanBrooke FriedmanPete & Alice FriedmanFunding FactoryTroy FunkLarry & Pauline FurmanValentina GabelaSherman & Shari GamsonLouise W. GaneElaine Harvey GarciaCynthia Stephens GareriLinda GarrettHenry & Mary GarveySarah GeartyAnna GeenBonnie GelbBruce & Nancy GerlachJessica GiesigeDonna GleasonMerille Felchle GloverJohn & Christina GodarEileen GodfreyFrances GoerlerLloyd GoinSherri GoldJay A. GoldbergRichard & Barbara

GoldenhershHilton GoldreichKelly GonzalesNancy GordonTheresa GraceGRC WirelessGreater Lowell Community

FoundationNorm & Judy GreenbergJack & K GreggKarol GresserAngela GriffinKate GriffinDoug GrimesAngela GriswoldR.J. & M.A. GrossmanMarjorie GrubeJesse & Alice GruberJill GrummanCarol GuilfordRobert GuthrieJohn & Diane HackettPaul HagermanJoanne & James HalpinMartin & Mary HamiltonMeg HamiltonLinda HamlinMelissa HannaKristy Elliot HansenWill & Kristine HansonJohn & Eileen HartJacob HauserJoanne HaysBarbara K. HeinzenJerry T. Herring D.D.SJoseph HershfieldKathy Heupler

Charlise Hill-LarsonAaron HipkinsDavid HoakNhan HoangCarl Wayne HoffmanBarbara Jane HomonDennis & Mona HoulihanMichael & Cynthia

HuempfnerMaxine HullNicole HundleyCharles & Susan HurowitzJoanne HutchingsSusan May HutchinsonJohn & Grace HuttoDavid HymaniGive.com HoldingsIllinois Tool Works

Foundation (Duane Schultz)

Kenneth InchaustiVirginia InmanIrish Restoration AssociationJ. JamesCharlotte JacksonHugh M. JacksonJanet JacksonVicki JacobsWilliam & Joan JagelJamie JamesJoni JamesCathy E. JasterRandy H. JasterSue JenkinsCallie JenningsToni JobesJohn Paul II High SchoolWarren & Carol JohnsonJeanne JonesKeith & Pat JonesJulia Brownley for AssemblyJunkermier, Clark,

Campanella, Stevens, P.C.Lorena Von KaenelAlan & Jean KahnKaiser Permanente

Community Giving Campaign

Martin & Mary KaneElise KaplanKeith & Betsy KaplanPat & Natalie KaterEvelyn KauffmanPatrick KealyBeverly KellyLouis & Ruth KesslerSeymour & Frances KesslerKey PharmacyTerri KeyesDiana KillianJustin KimballWendy KimseyHarold & Linda KindsvaterJeanne Kingsbury

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onos, emoas &buteL O O S E CONNECTIONS

Lyn KleinLaura KleinerCindy & Gary KleinschmidtElizabeth KlermanMary E. KluppingMartin KnechtRobert KnechtDeborah Harrison KnowltonAmelia KoenigSheila KohnMisty KoperHoward KornhaberSherry KovenDenise KruzikasElizabeth KupecNeil & Maureen KurtzHelen KuzelSusan KwikAnnette LakesBob & Carol LammJoan LangeDavid & Barbara LaRocheJoyce LarsonConstance LavalleeMichael LawsonMary LazaldeLemonade PI Inc. d.b.a.

Flowerpetal.comRobert LernerScot LeVanOphira LevantLevine for Assembly 2006Glenn & Diane LichtiWarner & Kevin LinquistMargaret LloydLocal Group of Greater

San DiegoKeith LochmuellerAnna Lee LocklarLeslie LoweSuzanne LoweMichelle Bateson LownLawrence & Pearl Loxterman Kenneth MacDougallElizabeth MacKnightNorra MacReadyElisabeth MakhoulNancy MalinowskiS.J. Mancuso & Mary

MancusoMark Eisenberg Family

FoundationSara MaroscherMargie MarstedMark MartinoJoseph & Margaret MaryCarol MasanaLinda MastPenny MatthewsAdrienne MayerAngela T. MazanetzDonna McBrianDonald & Katherie McBrideMargaret MaryMcBride

Eleanor McCannBarbara McCordJohn & Joan McCormickSheila McGinleyMichele McKeeGregory & Linda McKennaRoberta McKnightJennifer McLeodFlorence & Marjorie

McMullenDr. & Mrs. Joseph MearaCharlotte MecumMedco Employee

Giving Campaign/Joseph Randazzo

Diane MellonAlison MelsonIrene MelzerMemorial Health SystemSteven & Pam MermellMerlie & Karen MeyerPatricia Dale MicklusElwira MiezalElaine S. MittellRhonda MoonMichele MoretGregory MorganWilliam & Judith MorganPatti MoseleyLisa MullinixAnthony MunroePatricia MurphyCarol & Louis MyerowitzEsther & Hope MyersStephen & Charlene NashNational Fuel Gas SupplyDiane NeffMarshall NeimanLaurie NelsonGerard & Patricia NesterErika NeumannLinda Neuman-PotashNew Mexico EDNF GroupGeralyn NewellJohn & Diane NiermeyerNissan North America, Inc.Vanessa NnajiVicki NorrisMichelle NovakSheila OBrienAlma OgnibeneLinda OlveraJames OsenDiane PadwayMartha PalanzoBarbara PalmerBobbi PalmerSelena Michele PalmerSelena PalmerWilliam PalmerDavid PardoeVeronica ParfittSteven Park & Anne ParkDawn Parker

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Public LibraryChristopher WatsonNed WeinshenkerBen WeinsteinWelsh Valley Home &

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L O O S E CONNECTIONS

onos, emoas &bute1 8

onos, emoas &buteL O O S E CONNECTIONS 1 9

Tribute to EDSers Everywhere

To our incredible extended EDS family,Over the last five years or so, it has been one of the most blessed experiences in my lifetime to have discovered you and you me, my brothers, my sisters, and more often than not, my now close and dear friends. With sincere gratitude to you all I share with you these, my wishes, and my love, Mags.

Thank you all for the stories you have told, for the energy you have shared, and for the pennies you have rolled,

For the materials you have published, and for the interviews youve given,

For the condolences youve sent, and for the articles youve written,

For the influence youll have in spreading the word far and wide, for never backing down, and nevermore to hide,

For speaking your mind and opening your heart, for sharing your thoughts, and for selling your art,

For your patience with newbies sharing information and tips, and for traveling far despite not enjoying the trip.

For all this and more because life does go on, I wish you infinite blessings and a battle well have won.

One day, and soon, may we no longer suffer but until then we all shall rely on each other.

o ar our ankfulne o

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app 62d Weddin nniversarapp 90 irda, arar

app 85 irda, radnd expres my undyin ratitude or my

dad who tauht me an do anythin, and or my om who tauht me an also say i

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Thanks, mom,for always standing by me with love and

unfailing compassion. Angel

In honor ofPeter H. Byers, M.D.

From Carol Strickberger

L O O S E CONNECTIONS

onos, emoas &bute

I want to thank those who help mein so many wonderful ways:

Grace Berardini, Claire Blanca, Cynthia Colabella,Michele Darwin, Ross Entredicho, Mags Foote,

Michele Hegler, Debbie Ignacio, Sue Jenkins, Olivia Kennett,E. Lisa Makhoul, Mark Martino, Charlotte Mecum, Linda Neumann-Potash, Ellen Smith, Lani Wilson

and all who have taken the extra step by authoring articles to make Loose Connections an exciting and growing publication.

2 0

iarou are everything I know about love and everything I love about life. Thank you for your amazing support of me as I deal with EDS, and for your support of EDNF, making a difference for us all.

arar lo ou!

Cynthia ColabellaThank you for your dedication to increasing awareness of EDS and

establishing networks between EDNF and other organizations.(Group Leader, Central Florida Group; was awarded Scholarship for 2007 Advocates Extraordinaire

Advocacy & Leadership Training from Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy; represented EDNF at three professional conferences during 2007)

Accolades to the Medical ProfessionTo Dr. Nazli McDonnell and all those who have taken the time and made the effort to educate themselves about Ehlers-Danlos syndrome and for better serving us; and to EDNF for providing the materials to teach those who have not yet Seen the Zebra.

ribu arar odener, .. Your keen intelligence and skill shine for all who read Loose Connections and The Hinge.Your warmth and concern touch all who know you and trust in you.Your life time of achievements inspires all with EDS.Your leadership helps all in the EDS community.Your courage to face each day inspires all of us.You are all I ever dreamed of and more.

oic

L O O S E CONNECTIONSWINTER 2007 PAGE TWENTY-ONE

THIS IS WHATS IMPORTANTBY MARK C. MARTINO

When a person with EDS reports pain, even if out of proportion to physical findings, they should be listened to and believed.

in my opinion, that is the most important single sentence in the new Pain Management Medical Resource Guide for health care profes-sionals to understand. It also represents a personal evolution of sorts that Id like to share, as I discovered that writing about pain can be nearly as difficult as living with pain every day.

The MRGs are in a marketing tool; their purpose is to help increase awareness of EDS and the resources of the EDNF website among the medical professional community. Success is getting these brochures into the right hands and success is having it opened. Ive seen it happen: I give an Ehlers-Danlos MRG to a doctor or nurse, and they dont just put it away, they open it, look through it while theyre talking with me. Its happened every time Ive tried, and its a great feeling knowing theyll remember more about EDS and EDNF.

That would have been success enough to make me happy with the outcome. But the MRGs are also holding far more information than I thought possible when I started out. Partly this is due to intense research, mostly it is due to help from incredibly generous doctors. They have helped the MRGs become far more inherently useful than initially intended; it surprised me to receive committed and caring advice.

Still, the MRGs are not, and cant be, diagnostic tools or scientific papers of very much substance; it would be irresponsible for EDNF to produce a brochure designed to do anything more than highlight the knowledge available, but more than that is too much to expect from a brochure. These are not planned to be a substitute for thoughtful medical intervention, but to let practitioners know there is so much more information available.

The MRGs are a voice for EDS information in the language of medical professionals, welcoming them with an understanding of what they need and want to know about EDS and how to treat it. The MRGs strive to reach every doctor, nurse and technician into whose hands EDSers place themselves day-to-day. We want to encourage an interns interest and a researcher to look deeper into the growing body of knowledge about EDS. So it is important that I not be the voice of a patient with EDS when I work on the MRGs, and that I edit out the almost inevitable traces of sympathy-begging or demands for understanding, and present facts. Just the facts.

But eliminating my own patient prejudices was harder than I expected. The more I learned about pain, the more I found I had to take my own pain seriously The more I tried to present for doctors the damage chronic pain can cause, the more important it seemed to somehow take a stand, to make clear that EDS can cause pain. My journey with this MRG became compressed into that one stark sentence: When a person with EDS reports pain, even if out of proportion to physical findings, they should be listened to and believed.

Along the way, I was delighted to find myself learning entirely new ways of thinking: what fuzzy logic can teach about the effects of EDS as a control on the normal healing process of pain, and when that healing short-circuits into chronic pain; or how pain is still an entirely subjective experience that can be described but not really quantified objectively.

There were things I learned about my own responsibility as a patient, too. These also had no place in an MRG, either, but became worthwhile lessons. One is to listen to what my doctors

say, not what I want to hear. Another is to realize there has to be a long-term perspective: I will be living in pain the rest of my life, and the more of it I can manage in as many different ways as possible, the happier Ill be. No, my pain is not my fault; its not my doctors fault, either which is far easier to remember when dealing with doctors who obviously care, like the advisory panel, than it is in hour five of an emergency room wait.

Working on the MRGs is privilege enough, but Ive gained a lot in return. As I learned the details about pain and came to terms with what I face, I learned compassion for what my mother had gone through the last twenty years of her life. I discovered some strength she, and her mother, had given me, a gift that may even have been the result of their undiagnosed EDS. As my 51st birthday passed this week, I rediscovered her last written words:

Whenever you do something to stretch your mind, or exercise your intellect, Ill be with you.

Whenever you appreciate or engineer color, space, form, Ill be with you.

Whenever you hug somebody, or touch with hand or eye, Ill be with you.

This is whats important.

EDNF had only intended to mail the first, main Ehlers-Danlos MRG with Loose Connections. It is because our CEO asked Purdue Pharma L.P. that the Pain Management MRG is printed, and also being distributed to our members. The MRGs have not been intended to be patient-only brochures; this is another one in our series. Im thankful to Purdue for the chance to get it written and distributed quickly, but a little apprehensive; although the goal is to build awareness, many of the previous

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L O O S E CONNECTIONSPAGE TWENTY-TWO WINTER 2007

ALABAMAAlabama Group* Kelly Tinnon, President, glueless@comcast.net, 256-399-4068

ARIzONAEDNF Action Association of AZ Vicky Halleck, Organizer, ednfvicky@hotmail.com, 928-830-0011Phoenix Metro Group* Jennifer Scherr, President, jmgrimse@yahoo.com, 623-925-8708

CALIFORNIAEDS Advocates of Northern CA* Maggie Buckley, Pres., maggie_buckley@yahoo.com, 925-946-0384Group of Greater San Diego* Grace Berardini, President, gwranch@cox.net, 760-599-9478Online Information Group* Liza Sauls, President, thing1973@aol.com, 909-944-6778San Fernando Valley Branch* - Shari Gamson, President, sfvbranch.ednf@gmail.com, 818-757-7355

CONNECTICUTCT EDS Support & Awareness Group Tara Lopes, Orgnz., yoursecretary@sbcglobal.net, 860-749-6003Western CT EDS Support Group* Sandra Buscher, Pres., universalm@comcast.net, 203-798-9401

FLORIDACentral Florida Crackers Group Cynthia Colabella, Pres., zoomzoom@thevillages.net, 352-735-1853Emerald Coast Group* Sue Jenkins, President, 1suejenkins@earthlink.net, 850-729-2882South Florida EDS Group Linda Simmons, Organizer, southfloridaeds@bellsouth.net, 954-434-1792

GEORGIAAtlanta Area Support Group* Renee Hutchings, Pres., hutchingsrenee@hotmail.com, 404-610-0041

INDIANAMichiana Branch* Pam Malenfant, President, info@michianaednf.org, 269-429-8110

KANSASMid Kansas Connection Nathifa Love, Organizer., luminations@gmail.com, 316-944-7520

MARYLANDBaltimore Metropolitan Branch* Margaret Foote, ednfnorthernvirginia@comcast.net, 703-683-9637DC Metro Charter* Sheri Collins, President, ipassoc@comcast.net, 301-570-5718

MASSAChUSETTSEastern MA EDS Group Rachel Donlan, President, easternmasseds@yahoo.com, 781-848-1341

MIChIGANAnn Arbor EDNF Group* Katie Kerschbaum, President, info@a2-ednf.org, 734-741-5288

MINNESOTATwin Cities EDS Support Group Erica Sonnier, Organizer, twincitieseds@gmail.com, 651-458-4165

MISSOURISt. Louis Connection Group* Stephen Bell, President, ehlersdanlos@charter.net, 314-322-1214

NEBRASKANebraska Group* Linda Neumann-Potash, President, loosejoint@aol.com, 402-934-5908

NEW JERSEYNorth Central NJ Group* Lisa Schoenberg, President, lisa.cherry2sky@gmail.com, 732-566-1218

NEW MExICONM Connects EDNF Group* Angel Denardi, President, nmconnect@yahoo.com, 505-690-1690

NEW YORKNew York City Group* Jacqueline Cox, President, eds.nyc@gmail.com, 212-987-9821Thousand Island NY EDS Group Jo Ann Reff, President, crafty444@hotmail.com, 315-639-3218Western New York Branch* Dawn DeWein, Co-President, dmdewein@yahoo.com, 716-688-8291 Lynda Pixley, Co-President, lyndapixley@yahoo.com, 716-791-3049

NORTh CAROLINAPiedmont Triad Branch* Angie Smith, President, piedmont_ednf@yahoo.com, 336-694-9553

OREGONPacific Northwest Group Susan Burkett, President, sburkett@careerdirectionsnw.com, 503-234-7289

RhODE ISLANDSouthern New England Connections* Karen Ferris, President, karenf30@verizon.net, 401-683-2680

TExASDallas-Fort Worth EDS Group* Julie Bentler, President, dfwedsgroup@verizon.net, 469-964-0859Greater Austin EDS Group Wilma Steenbergen, Pres., wilmasteenbergen@yahoo.com, 512-401-9710Greater Houston Branch* Michele Hegler, President, michele.hegler@sbcglobal.net, 281-486-5521San Antonio EDS Group* Irene Pierce, President, gizpie@sbcglobal.net, 210-392-3880

VIRGINIANorthern Virginia Group* Margaret Foote, Pres., ednfnorthernvirginia@comcast.net, 703-683-9637Richmond & Central Virginia Group* Diana Harris, Pres., dianamharris1@comcast.net, 804-272-6701

*Chartered Groups

LOCAL GROUP LISTINGS

Funded by this years Triple It! campaign, our Raising Awareness Kit will

be offered free to any health care professional until March 1, 2008.

This jam-packed kit will include the EDS All Types CD-ROM, the General Awareness

brochure, our EDS Medical Resource Guide, a wallet card and the most current issue of Loose Connections.

Kits will be mailed to any health care profes-sional by EDNF on request (we do reserve the

right to limit quantities); e-mail medinfo@ednf.org. Please pass this newsletter on to medical

professionals and help us build awareness throughout the medical community.

MRGs didnt make it to the doctors, nurses, therapists and clinics they stayed with our members. We need to share these. Dont keep them, give them out.

So please, open the Pain Management MRG, and while youre reading it, think of the doctors and volunteers who cared enough to work hard on it, and remember there are people in the world who do want to help. Then pass the MRG on to a doctor, nurse, someone who needs to know it. You can share my joy: watch them open it, and know that youve changed someone a little by connecting EDS to chronic pain in their minds, maybe for the first time. Youve just made it a little easier for the next EDSer they meet; thank you.

FOR THOSE OF YOU WHO MADE IT TO THE END: download http://www.ednf.org/images/stories/MRG_Research/mrgpainresearch.pdf it contains hyperlinks to much of the research used, as well as information that didnt fit. Enjoy. Ed.

(continued from previous page)

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WINTER 2007L O O S E CONNECTIONS

Come to the2008 EDS LEARNING CONFERENCEJuly 31August 2 in Houston, TexasAND

Give someone a registration fee for the holidays and well provide a special gift card!And you dont have to fight those frantic buyers

Just e-mail Judy Sobel atjcs123@comcast.net.Only $200 until December 31, 2007.

THIS EDITION OF LOOSE CONNECTIONS IS COPYRIGHT 2007 BY EHLERS-DANLOS NATIONAL FOUNDATION. ZEBRA image on page 10 2007 EDNF. PHOTOGRAPHY FROM iPHOTO CREDITS: COVER Tree and Snow 2007 Maurice van der Velden; PAGE HEADER Bare Branches 2007 Sergei Sverdelov; PAGE NO. HEADER and ABOVE 2007 Rick Hyman; PAGE 7 Ice Branches 2005 retinal_experiments.