Loose Connections (Winter 2008)
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WINTER 2008 “Advocacy without research is not credible. Research without advocacy is CONNECTIONS not relevant.” LOOSE Albert Einstein 2009 EDNF COMMUNICATIONS THEME TABLE OF CONTENTS Advocacy: active support of a cause or course of action. — Collins Essential English Dictionary 2nd Edition 2006 © HarperCollins Publishers 2004, 2006) WINTER 2008 ADVOCACY IS: I am only one, but still I am one. I cannot do everything, but still I can do something; ADVOCACY • Speaking up for ourselves or for others; and because I cannot do everything, I will • An attempt to change HOW THINGS not refuse to do something that I can do. Letter From the Board .........2 WORK in order to change HOW THINGS ARE. — Helen Keller EDNF: From 2008 to 2009 ..3 Feature Articles ............... 4-6 Reasons for taking charge of your situation Advocacy is the pursuit of influencing From the Editor’s Desk .......5 and becoming a Self-Advocate: outcomes — including public-policy and Remembering Why I Write resource allocation decisions within • In order for others to know that you political, economic, and social systems and Poetry ..................................9 disagree with them or that your rights institutions — that directly affect people’s And Your Little Dog Does, have been disregarded, you need lives. (Cohen, 2001) Too! ....................................18 to — TELL THEM!! • You are the expert on your life situation Therefore, advocacy can be seen as a and what you think, feel and need. Don’t deliberate process of speaking out on issues MEDICAL wait for someone else to speak out on of concern in order to exert some influence your behalf; it may never happen! on behalf of ideas or persons…. Advocacy Ophthalmology MRG ........10 • The people who have the authority to groups are different from political parties Rescue of Migratory Defects make decisions in your situation will which “seek to influence government policy Of EDS Fibroblasts ...........11 think everything is OK if you don’t speak by governing.” They are “any organization up for yourself. that seeks to influence government • By speaking out, you may in fact be policy, but not to govern.” This definition MEMBERSHIP & NEWS helping a lot of other people in the same includes social movements, sometimes or similar situations. network of organizations which are also Board of Directors ...............2 • You have a responsibility to yourself to focused on encouraging social change. Submissions Guidelines ......3 take care of yourself. Speaking out will Social movements try to either influence Donors ...............................14 help you to keep your self-respect and governments or, like the environmental dignity. movement, to influence people’s ideas or Membership Form .............19 — From “How to Become a Self-Advocate,” by actions. Vedna McGill and Dorothy McKenna; funded by — From Wikipedia, the free encyclopedia e d n f . o r g Status of Women Canada at http://womanspace.ca. L O O S E CONNECTIONS PAGE TWO • WINTER 2008 PUBLISHERS INDEX Published Quarterly by LETTER FROM THE BOARD OF DIRECTORS Ehlers-Danlos National Foundation “§ positive attitude may not solve all your problems, but it will FOUNDER Nancy Hanna Rogowski annoy enough people to make it worth the effort.” — Herm Albright 1957 – 1995 S the year comes to a close I organizations working towards the same reflect back on all that has been goals. President & CEO happening at EDNF and am filled Cindy Lauren A with pride. The year began with a flurry I was privileged to participate in a radio of activity as we worked together to host program on Sirius XM’s Doctor Radio Board of Directors the 17th Learning Conference in Houston. that we believe will be the first in many Robin Coppi The first EDNF Kids & Teens program was opportunities for EDNF in the media. Michele Darwin an overwhelming success and I am proud The hour-long discussion with Dr. Claire Richard Goldenhersh to report that many of the friendships Francomano and Dr. Stephen Honig Jeanne Kingsbury formed between our younger members (Director of the Osteoporosis Center at the Cindy Lauren continue today. These are the relationships Hospital for Joint Diseases) enabled EDNF that will enable our children to become to reach a nationwide listening audience and Charlotte Mecum spokespeople for EDNF. discuss EDS. Callers with questions came Professional Advisory from across the country, including Rhode Network The new MRG series including the Pain Island, Illinois, California and even Canada. Management, Dentistry and Ophthalmology The program was very well received. We Patrick Agnew, DPM MRGs are allowing EDNF to educate the were able to touch on the general definition Peter Byers, MD medical professionals with a renewed of Ehlers-Danlos syndrome and the warning Edith Cheng, MD commitment to reach the medical signs as well as some of the challenges in Joseph Coselli, MD, FACC schools and specialists with the most diagnosis and long-term concerns. Sixty Joseph Ernest III, MD up-to-date information available to us minutes was not enough, but it did allow us Clair Francomano, MD from the greatest minds in research and to touch on the genetic component, some treatment of EDS. The Pediatrics One-Sheet of the concerns related to bone and cardiac Tamison Jewett, MD is successfully allowing us to begin a new health as well as symptomatic treatment Mark Lavallee, MD initiative of educating the physicians and special monitoring concerns for the Howard Levy, MD, PhD who care for well children to look for the vascular type of EDS. Nazli McDonnell, MD, PhD physical characteristics of hypermobile Dianna Milewicz, MD, PhD joints and skin/bruising issues that could A call to participate in membership was Anna Mitchell, MD, PhD be warning signs for an inherited disorder widely answered and we are seeing our of the connective tissue like EDS. If we can membership grow which is the key to Raman Mitra, MD, PhD educate physicians to keep an eye on these our future. Please remember that all that Linda Neumann-Potash, RN, MN characteristics then we can look forward we accomplish at EDNF requires funds Terry Olson, PT to more conversations with parents and to produce and distribute. Membership Mary F. Otterson, MD, MS more referrals to geneticists that can lead and donations are what sustain us. Every Melanie Pepin, MS, CSG to early diagnosis. dollar makes a difference and no donation Elizabeth Russell, MD is too small. Help us spread the word and Ulrike Schwarze, MD As we begin 2009 with the theme share in our excitement at all we have of Advocacy, we can count on even accomplished and all that is in store for us Karen Sparrow, PhD more presence in Washington, D.C. in the future. We are making a difference Brad Tinkle, MD, PhD Relationships with the Coalition for Skin and we will continue every day with our Mike Yergler, MD Diseases (CSD) and the National Institute positive attitudes and proactive energy to of Arthritis and Musculoskeletal and Skin make a difference of the lives of everyone Editor Diseases (NIAMS), in addition to NORD with EDS. Barbara Goldenhersh, PhD and GenTAC, are strategically putting EDNF in the best possible place both Graphics/Type individually and collaboratively with other Michele Darwin Mark C. Martino EDNF Board of Directors, Chair L O O S E CONNECTIONS WINTER 2008 • PAGE THREE GUIDELINES FOR SUBMISSIONS EDNF: FROM 2008 TO 2009 TO LOOSE CONNECTIONS 1. For text documents, use Helvetica or Times of at least T has been a strong but challenging • Doctor Radio, Sirius XM Radio – Michele 10 points (preferably 12 to year for EDNF. Our volunteers are Darwin & Claire Francomano 16) in size, so our editors can really taking EDS awareness to the • Triage query correspondence – Sue easily read your document I and prepare it for publication. forefront. It is due to their commitment Jenkins Attach the text document in and passion that we have been able to • EDS Survey – Stacey Le Fevre either Word (.doc) or Rich Text Format (.rtf) to an e-mail make these strides forward, creating a • Issues and Management of Joint sent to [email protected] that recognizable brand, one that immediately Hypermobility manual – Dr. Brad Tinkle also tells us how to reach you conveys EDNF’s commitment to for more information. responsible, accessible and reliable 2. For photographs, attach them to an e-mail to editor@ednf. information. They have further made some Meetings & Conferences: org; send three to five images serious advancements in addressing the • Houston Conference – Conference that are at least 2400 x 3000 overall legal and legislative areas which will chair, Michele Hegler, and committee pixels (300 dpi resolution & 8 x 10 inches) and without directly impact our members. These may • American Assoc. of Family Physicians compression beyond that per- not seem as critical as physician education, meeting – Greater San Diego Group formed by the camera when but have just as dramatic an effect once a • Kids & Teens Program – Michele Darwin it was taken. In the e-mail, please identify the event or diagnosis of EDS is achieved. • EDS Training Day – EDS Advocates cause for the photographs, of Northern California including any relevant iden- Please join us in thanking those who have • Local Group Liaison – Troy Winkels tification (persons involved, date, photographer’s name if made such important efforts on behalf of needed) and how to reach you the entire EDS community. for more information. Fundraising: 3. Following are the deadlines • “Triple It!”second year – Angel donor for the next year of four issues;