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From: info@... <info@...>Subject: Fwd: NDSC Affiliate E-Briefstpearson@...Date: Tuesday, March 10, 2009, 8:43 AM----- Forwarded message from sue@... ----- Date: Thu, 5 Mar 2009 15:52:18 -0500 (EST) From: Sue Joe <sue@...>Reply-sue@... Subject: NDSC Affiliate E-Brief info@...You're receiving this email because you are an affiliated parentorganization of the National Down Syndrome Congress. Please

confirmhttp://visitor.constantcontact.com/c.jsp?t=1102488531242.450.321071033.2 & m=1101343243561 & wl=Fyour continued interest in receiving email from us. You may unsubscribehttp://visitor.constantcontact.com/d.jsp?v=001_D6q8SmIH1oFPmJ9_nihIhLI0k4kxy-XSYUiQs6jk4zt3IR7xlHMx37Y4Rcf61qW & p=unif you no longer wish to receive our emails.National Down Syndrome CongressAffiliate E-Brief 3.5.09In This IssueBaby Doe SymposiumAffiliates in Washington, DCNDSC Annual ConventionSujeet in the NewsWhat 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 calledesophagealatresia. These "Baby Doe Rules" were passed as an amendment

to theChild Abuse Preventionand Treatment Act in 1984, in direct response to that Baby Doe, whose parentschosenot to authorize treatment of his medical condition. The parents andobstetricianargued in court that his diagnosis of Down syndrome was too great a burden tobear,and that his predicted quality of life was minimal. And while other hospitalstaffand physicians disagreed and appealed the court's decision, Baby Doe wasnot treatedand died six days after his birth.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~25th Anniversary of the Baby Doe RulesLast month, the NDSC attended a symposium held in honor of the 25th anniversaryof the Baby Doe Rules. Among the attendees were neonatologists, ethicists,attorneysand advocates. This passionate discussion and debate continues regarding therolesof parents, health care providers and government

when it comes todecision-makingin the treatment of seriously ill newborns. Fortunately for our families,Trisomy21 is no longer at the forefront of the discussion; rather it is the babiesborn extremely pre-term who are now the primary focus of these rules.In reviewing our newsletters from the early 1980's, it was interesting tonote thatone of the roads taken by the NDSC at the time of Baby Doe was to turn to themediato publicize the "positive side of Down syndrome". Board membersparticipated in radio and TV programs presenting "up to date information about Downsyndrome andpromoting the worth of individuals with Down syndrome". Sound familiar?It's whatwe continue to do today and ask you to do as well.How is the We're More Alike Than Different campaign working in yourcommunity? Andwhat can we do to help make the campaign a success where you

are?~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Affiliates in Action in Washington, DCWe were happy to be part of that contingent of affiliate leaders who visitedtheirlegislators on Capitol Hill last week. The Affiliates in Action event was ahuge success - bringing the leaders of the Congressional Down Syndrome Caucus in tomeet with us, as well as helping us focus on legislative priorities that aretimely,reasonable and actionable. We encourage you to continue the relationships youmadein DC back at home - both with your legislators and their staffs, and with theaffiliateleaders you met in Washington. We'd like to thank the AIA planners andorganizersfor all their hard work and dedication that made 2009 conference such asuccess.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~NDSC Annual

Convention, July 31-August 2, 2009Registration for this year's convention, Golden Dreams, will be availableonline shortly. Have you made your hotel reservations? We're excited to offer tenin-depthpre-conference sessions, including Affiliates LEAD: A Seminar for Leadership,Educationand Advancement. This pre-conference is designed specifically for our affiliateleaders, and will be planned with your input. Don't forget, all currentaffiliatescan send two representatives to this session at no charge. We'll sendregistrationdetails to you as soon as they are available.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Self Advocate in the NewsOne of our favorite self advocates, Sujeet Desai, wowed the audience and theworldwith his performance at the opening ceremonies of the Special Olympics 2009WorldWinter Games last month in Idaho. Check out

this video with Suj and KristiYamaguchi,and appreciate the talent that we've all come to know and love here at theNDSC! http://vimeo.com/3422310[http://rs6.net/tn.jsp?et=1102488531242 & e=001_wgeHuoEoGQXnNOTCcU-PV_IPaMfNCs6OAQj5DpmPhaD7rxgNz6Faha7BZC8RnU8poiweGE_zow_udXXRiaqLf8lApiQpqzw5sn6NycYnLu-wXjqbOU4Bw==]~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~What Other Things Should I Know About? Soper (you know, the editor of Gifts) is giving away copies of hermemoir,The Year My Son and I Were Born, A Story of Down Syndrome, Motherhood, andSelf-Discovery.If you are interested in reviewing this book for your newsletter, please sendyourcontact name and mailing address to kathrynsoper@...[mailto:kathrynsoper@...]by March 10, 2009. Fifty organizations will receive a complimentary reviewcopy!World Down Syndrome Day is

coming...what do you have planned? In Indiana, folkswill be celebrating the 5th anniversary of 's Upside Down Ball. Thisfundraiserbenefits families whose children have both Down syndrome and cancer. In Dayton,OH, families will get to hear self advocate Gaffney "Imagine thePossibilities"for those with Down syndrome. In Cincinnati, the St. 's Day paradewill bericher as participants with Down syndrome and their families take part.Please let us know about your activities so we can share them with otheraffiliates!~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Sincerely,~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Lori McKee, Board Member and Sue Joe, Resource SpecialistNational Down Syndrome Congress~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Forward

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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@... 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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National Down Syndrome CongressAffiliate E-Brief 5.19.09

In This Issue

ACOG Exhibit

Survey for Affiliate Leaders

Book Project

More Alike Than Different

What Other Things Should I Know About?

Dear Affiliate Leaders,

Late in March, the NDSC attended the American College of Medical Genetics conference as an advocate partner. This meant in addition to attending the conference workshops, we also participated alongside a small group of advocates from the disability community, and were able to take part in daily discussions with genetics specialists -- physicians, researchers, genetic counselors, and public health workers -- on topics that directly affect the patient. It was eye opening for everyone at the table to hear and discuss

complex issues surrounding genetics and genetic testing. The clinicians were really grateful to have an opportunity to talk with us and it was really great to be heard!

Exhibiting at ACOG

Earlier this month, we exhibited for the third year at the annual clinical meeting of ACOG (American College of Obstetricians and Gynecologists). Along with our partners at the National Down Syndrome Society, and volunteers from our affiliate in Chicago, NADS (that's Sheila Hebein and Bridget Brown pictured), we are hopeful that we made a difference, by helping today's practicing physicians learn more about Down syndrome, and helping them understand the important role they play when delivering the diagnosis, whether prenatally or postnatally. We provided written materials to those who stopped by, but probably more importantly, made a personal connection by talking to doctors from a parent- (and self advocate-) perspective.

Also this Spring, NDSC Executive Director, Tolleson, attended the National Convening on Disability Rights and Genetic Technologies (another opportunity to network with leaders of national disability organizations), as well as a White House briefing on disability policy. We are really pleased with the connections we've been able to make with other like-minded organizations!

NDSC Annual Convention: Survey for Affiliate Leaders

The convention is coming! The convention is coming! Are you making plans to attend? We are very excited about our affiliate leaders' pre-conference session, LEAD, and have some questions for you. Please take a couple of minutes (really!) to go to this survey and let us know what you think: http://survey.constantcontact.com/survey/a07e2ie4ht9fu2ozb3n/start

Self Advocate Council's Book Project: You Can Make a Difference

Our Self Advocate Council is once again gearing up for their book project at the convention. Each year, through self advocate donations, the NDSC is able to present selected books that positively portray people with Down syndrome to a library or school system in our host city. (If you're not familiar with the Book Project, you can learn more about it on our website.)This year our self advocates are encouraging our affiliates to spend $100 and purchase a book bundle for a school in your own community! If you're attending the convention, you can purchase the book bundle right there and take it home

with you. Or, you can make a purchase and we'll ship the books for you. If you plan to purchase books in Sacramento, please let us know by emailing sue@... so we can have enough on hand. This would be an awesome opportunity for your self advocates to make a presentation of books to a school or school district in your community! Let us know if you'd like more information. http://www.ndsccenter.org/selfadvo/project.php .

More Alike Updates

Thank you to the Down Syndrome Association of Memphis and the Mid-South for using the More Alike Than Different tagline in their annual report's cover letter. And how about this photo - even in Nepal, a parent group has found a way to say, We're More Alike than Different!

What's happening with More Alike in your community? Let us know so we can share!

What Other Things Should I Know About?

Parents of children with Down syndrome and adult siblings of persons with Down syndrome are invited to be in a web-based, survey research study. The purpose of this Penn State study is to learn more about needs and expectations for genetic counseling. No prior experience with genetic counseling is necessary. The survey takes about 30 min to complete. If you are interested in being in the study, please, go to https://online.survey.psu.edu/downsyndrome/ General results will be shared with the National Down Syndrome Congress at the

completion of the study. For more information contact Kathy s, MS at 814-865-1392 or kfp1@.... Please, please, please help this research project on genetic counseling!There is some great information available through the Inclusive Schools website, including info on an upcoming (May 27) webinar featuring inclusion expert Giangreco. This would be a terrific resource to recommend to your school district's special education department. Visit the Inclusive Schools website for details: http://www.inclusiveschools.org

Sincerely,

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

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