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National Down Syndrome CongressAffiliate E-Brief 3.5.09

In This Issue

Baby Doe Symposium

Affiliates in Washington, DC

NDSC Annual Convention

Sujeet in the News

What Other Things Should I Know About?

Dear Affiliate Leaders,

In 1984, a federal law was created in response to the death of a Bloomington, IN infant born with Down syndrome and an operable medical condition called esophageal atresia. These "Baby Doe Rules" were passed as an amendment to the Child Abuse Prevention and Treatment Act in 1984, in direct response to that Baby Doe, whose parents chose not to authorize treatment of his medical condition. The parents and obstetrician argued in court that his diagnosis of Down syndrome was too great a burden to bear, and that his predicted quality of life was minimal. And while other hospital staff and physicians disagreed and appealed the court's decision, Baby Doe was not treated and died six days after his birth.

25th Anniversary of the Baby Doe Rules

Last month, the NDSC attended a symposium held in honor of the 25th anniversary of the Baby Doe Rules. Among the attendees were neonatologists, ethicists, attorneys and advocates. This passionate discussion and debate continues regarding the roles of parents, health care providers and government when it comes to decision-making in the treatment of seriously ill newborns. Fortunately for our families, Trisomy 21 is no longer at the forefront of the discussion; rather it is the babies born extremely pre-term who are now the primary focus of these rules. In reviewing our newsletters from the early 1980's, it was interesting to note that one of the roads taken by the NDSC at the time of Baby Doe was to turn to the media to publicize the "positive side of Down syndrome". Board members participated in radio and TV programs presenting "up to date information about Down syndrome and promoting the worth of individuals with Down syndrome". Sound familiar? It's what we continue to do today and ask you to do as well. How is the We're More Alike Than Different campaign working in your community? And what can we do to help make the campaign a success where you are?

Affiliates in Action in Washington, DC

We were happy to be part of that contingent of affiliate leaders who visited their legislators on Capitol Hill last week. The Affiliates in Action event was a huge success - bringing the leaders of the Congressional Down Syndrome Caucus in to meet with us, as well as helping us focus on legislative priorities that are timely, reasonable and actionable. We encourage you to continue the relationships you made in DC back at home - both with your legislators and their staffs, and with the affiliate leaders you met in Washington. We'd like to thank the AIA planners and organizers for all their hard work and dedication that made 2009 conference such a success.

NDSC Annual Convention, July 31-August 2, 2009

Registration for this year's convention, Golden Dreams, will be available online shortly. Have you made your hotel reservations? We're excited to offer ten in-depth pre-conference sessions, including Affiliates LEAD: A Seminar for Leadership, Education and Advancement. This pre-conference is designed specifically for our affiliate leaders, and will be planned with your input. Don't forget, all current affiliates can send two representatives to this session at no charge.. We'll send registration details to you as soon as they are available.

Self Advocate in the News

One of our favorite self advocates, Sujeet Desai, wowed the audience and the world with his performance at the opening ceremonies of the Special Olympics 2009 World Winter Games last month in Idaho. Check out this video with Suj and Kristi Yamaguchi, and appreciate the talent that we've all come to know and love here at the NDSC! http://vimeo. com/3422310

What Other Things Should I Know About?

Soper (you know, the editor of Gifts) is giving away copies of her memoir, The Year My Son and I Were Born, A Story of Down Syndrome, Motherhood, and Self-Discovery. If you are interested in reviewing this book for your newsletter, please send your contact name and mailing address to kathrynsoper@ gmail.com by March 10, 2009. Fifty organizations will receive a complimentary review copy! World Down Syndrome Day is coming...what do you have planned? In Indiana, folks will be celebrating the 5th anniversary of 's Upside Down Ball. This fundraiser benefits families whose children have both Down syndrome and cancer. In Dayton, OH, families will get to hear self advocate Gaffney "Imagine the Possibilities" for those with Down syndrome. In Cincinnati, the St. 's Day parade will be richer as participants with Down syndrome and their families take part.

Please let us know about your activities so we can share them with other affiliates!

Sincerely,

Lori McKee, Board Member and Sue Joe, Resource SpecialistNational Down Syndrome Congress

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