Archive for 2012

The Global Down Syndrome Foundation and the National Down Syndrome Congress are excited to announce distribution agreements that will get the new Down Syndrome Prenatal Testing Pamphlet in the hands of pregnant women across the U.S.

Amid the overwhelmingly positive response since the pamphlet’s release two weeks ago, the organizations anticipate the distribution of more than 100,000 pamphlets to pregnant women across the U.S. over the next year.

More than 1,000 of the up-to-date, accurate pamphlets have been requested through the pamphlet’s corresponding website, www.downsyndrometest.org, and a distribution agreement with Sequenom Center for Molecular Medicine will wind up with the pamphlets in medical offices across the U.S.

Sequenom CMM, one of the largest prenatal testing laboratories in the United States, will provide medical professionals with the pamphlet, and will recommend that those who administer their test offer the pamphlet to patients / expectant parents at the point of testing and diagnosis.

The pamphlet format allows for easy updates and distribution. The costs for approved distribution of the pamphlet (printing and shipping) will be incurred by Sequenom CMM, the Global Down Syndrome Foundation and the National Down Syndrome Congress. There is no financial benefit or incentive associated with the distribution agreements.

To read the complete press release announcing the distribution agreements, click here.

Vanessa Paradis and Marin Gerrier in "Cafe de Flore" / IMDB

Two movies out this fall feature young actors with Down syndrome as lead characters. “Cafe de Flore” features Vanessa Paradis as Jaqueline, a single mother whose son, Laurent (Marin Gerrier), has Down syndrome.

“Any Day Now” is the story of gay lovers who try to adopt a boy with Down syndrome, played by Los Angeles actor Isaac Leyva.

Both movies are part of a trend to include people with Down syndrome in the storylines of movies and TV. “Glee” and “The Secret Life of the American Teenager” (starring Global Down Syndrome Foundation Quincy Jones Exceptional Advocacy Award recipient Luke Zimmerman) are long-running examples.

Isaac Leyva / IMDB

Though these new releases revolve around characters with Down syndrome, they are not focused on Down syndrome per se. Both films are about the love of families no matter the form they take.

Check out stories on the movies on Disability Scoop.

Website harnesses local distribution, Sequenom CMM to provide national footprint

DENVER/ATLANTA (Nov. 27, 2012) – The Global Down Syndrome Foundation and the National Down Syndrome Congress have announced distribution agreements for the hallmark Down Syndrome Prenatal Testing Pamphlet that provides current, accurate information about Down syndrome to pregnant women and families.

The organizations anticipate distributing 25,000 pamphlets in the next year through the pamphlet’s new corresponding website, www.downsyndrometest.org. In the two weeks since the website launched, more than 1,000 pamphlets have been requested and are in the process of being distributed to several states, including California, Michigan, West Virginia, Texas and Florida. These pamphlets will be delivered free of charge by the end of the year, and distributed to pregnancy centers, OBGYN offices, parent support groups and to participants at an upcoming perinatal conference.

In addition to local distribution accessed through the website, the pamphlet will be distributed nationally by Sequenom Center for Molecular Medicine ^TM (Sequenom CMM), one of the largest prenatal testing laboratories in the United States. Sequenom CMM will provide medical professionals with the pamphlet, and will recommend that those who administer their test offer the pamphlet to patients / expectant parents at the point of testing and diagnosis. In the next year, Sequenom CMM anticipates providing between 75,000 and 100,000 printed copies of the pamphlet to the medical centers and facilities administering the MaterniT21^TM PLUS LDT.

“Sequenom CMM has expressed a desire to better understand the Down syndrome community’s concerns regarding prenatal testing, which opened up a discussion for them to distribute our pamphlet,” said David Tolleson, Executive Director of the National Down Syndrome Congress. “We appreciate their input on our pamphlet, and particularly the acknowledgment in their marketing materials that these tests can help a woman or family to ‘prepare medically, emotionally and financially for the birth of a child with special needs’.”

“It is so important to provide a pamphlet to pregnant women that explains both the prenatal testing associated with Down syndrome and facts about the condition,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. “Requests for local distribution continue to grow through the website, and coupled with Sequenom CMM’s nationwide footprint, we expect to have a real and positive impact on thousands of pregnant women and their families.”

Dan Ketcherside, Director of Market Development at Sequenom CMM agreed, “Sequenom CMM encourages medical professionals to offer accurate information to pregnant women and their families about the conditions tested for through our products. The Global Down Syndrome Foundation and the National Down Syndrome Congress graciously included our perspective on prenatal testing in their pamphlet with messaging that mirrors the dialogue we’re already having with specialists around the country. We are honored to be a partner for this important educational material.”

The Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to monitor advances in prenatal testing. They will also measure the impact of the pamphlet through follow-up surveys and update the pamphlet as appropriate. Sequenom CMM will also contribute to the pamphlet’s utility by surveying medical professionals on a quarterly basis.

The pamphlet format allows for easy updates and distribution. The costs for approved distribution of the pamphlet (printing and shipping) will be incurred by Sequenom CMM, the Global Down Syndrome Foundation and the National Down Syndrome Congress. There is no financial benefit or incentive associated with the distribution agreements.

For free downloads of the pamphlet or to learn more, visit www.downsyndrometest.org.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show — the single-largest annual fundraiser benefiting people with Down syndrome.  Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

About the National Down Syndrome Congress

Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them.  A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.  Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and, its outreach to individuals from diverse backgrounds.

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Dear Friends and Colleagues,

THANK YOU for your wonderful support of our work and most importantly for believing in a brighter future for our children and adults with Down syndrome.

With your kind support, in 2012 we have:

• Established the first national registry for people with Down syndrome through the National Institutes of Health
• Established the Down Syndrome Prenatal Testing Pamphlet in collaboration with the NDSC
• Launched an annual $1 million research grant program through the Crnic Institute
• Provided expert medical care to over 500 children with Down syndrome through the Sie Center for Down Syndrome at Children’s Hospital Colorado
• Provided critical educational training to 70 teams of parents and professionals representing 28 schools
• Trained and organized 500 self-advocates and their family members to meet with their legislative representatives in Washington DC
• Launched three new programs for people with Down syndrome and maintained seven others
• Successfully held the Be Beautiful Be Yourself Fashion Show fundraisers in Denver and Washington DC
• Co-organized the first Alzheimer’s disease-Down syndrome scientific summit with the national Alzheimer’s Association

YOU have enabled us to be positive agents of change. We cannot thank you all enough for making our work possible!

As you reflect on life and family over the Thanksgiving weekend, and consider your year-end giving, I hope you will consider helping us to fulfill a year-end goal to support our newest initiative – the establishment of the first Alzheimer’s disease clinical care center in Colorado. In fact it will be the only one in a 600-mile radius of Denver! If you donate by December 4th to our Colorado Gives Day site, your donation will be matched dollar for dollar.

For our friends in the US and Americans abroad, have a wonderful (and safe!) Thanksgiving holiday!

With much gratitude,
Michelle Sie Whitten and the team at Global Down Syndrome Foundation

Mady

The Global Down Syndrome Foundation is happy to announce the winner of our first Halloween Costume Photo Contest: Mady Kirkpatrick of Illinois dressed as a ladybug for Halloween, and her photo led the pack with an amazing 639 likes on our Facebook album page!

The Global Down Syndrome Foundation is donating $250 to UPS for DownS, the local Down syndrome nonprofit organization selected by Mady’s parents, Vicki and Gregg. UPS for DownS stands for United Parent Support for Down Syndrome, serving families that love someone with Down syndrome.

Mady is 2 years old and will turn 3 on Christmas Day. This was the first Halloween that Mady was able to walk up to the doors while she was trick-or-treating. Her speech therapist made her a sign that said “Trick or Treat,” and she proudly show her sign and say “TREAT!!!” Then she’d turn the sign around, and it read “Thank you.” She would then use sign language to say thanks for the treats.

She has three older sisters, and her mom says she loves to follow their lead. One night, her oldest sister was dancing, and Mady watched and repeated her moves. Then Mady would do a move, and her sister would copy her. After going back and forth a few times, Mady did the splits, and her sister couldn’t duplicate it, so Mady got up, clapped and said, “Yea!,” feeling like she won the “competition.”

Mady’s mom says Mady is a fighter. “She was close to death a couple of times, and thankfully she fought back … AND WON!!!” she says. “She doesn’t give up on learning, even when she has had enough. We always joke and say instead of having plenty of Attitude, she has plenty of Mad-a-tude.”

Mady loves learning new things and playing on the iPad. Her favorite food is cookies of any kind.

“Gregg and I feel so lucky to have Mady and her sisters in our lives,” Vicki says. “They have changed us for the better. We treasure every moment with them!”

Thank you to everyone who shared their photos in the contest. Every photo showed the world a precious child and put smiles on countless faces.

National Down Syndrome Congress, National Down Syndrome Society and Global Down Syndrome Foundation Collaborate on Prenatal Testing Issues

Multiple educational resources and tools exemplify unity around important global issues

ATLANTA/NEW YORK/DENVER (Monday, Nov. 19, 2012) – The National Down Syndrome Congress (NDSC), the National Down Syndrome Society (NDSS), and the Global Down Syndrome Foundation (Global) announced a collaborative effort to create multiple educational resources and tools to address prenatal testing issues facing pregnant women as well as the Down syndrome community.

Earlier this month, the Global Down Syndrome Foundation and the National Down Syndrome Congress published the first Down Syndrome Prenatal Testing Pamphlet, an accurate, informative, easy-to-read resource for pregnant women and their families. The pamphlet is available in English and Spanish at www.downsyndrometest.org and is being distributed to pregnant women and to medical professionals who work with pregnant women. The creation of the pamphlet included input from medical professionals, parents, and survey results from over 200 people in the Down syndrome community.

“NDSS applauds the efforts of NDSC and Global in getting this pamphlet out to women and families.  NDSS has a long history of working on prenatal testing issues, and the NDSS statement on prenatal testing guides our involvement on this critical issue for our community, along with our Prenatal Testing Committee, made up of providers with decades of experience on prenatal testing, self-advocates, parents, board members, and staff,” said Jon Colman, President of NDSS.

In addition to the Down Syndrome Prenatal Testing Pamphlet, NDSC and Global support the prenatal testing information state advocacy initiative being rolled out by NDSS. As part of its effort to ensure accurate, up-to-date and balanced information on prenatal testing, NDSS has created a first-of-its-kind toolkit that encourages states to pass legislation modeled after a bill recently passed in Massachusetts.

The legislation echoes the Prenatally and Postnatally Diagnosed Conditions Act (also known as the Kennedy-Brownback bill), which increases the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. This toolkit includes state model legislation and advocacy tools. NDSS is working with local Down syndrome organizations and its statewide government affairs committees to pass prenatal information laws in several states.

“The work of the NDSS and our pamphlet truly go hand in hand,” said David Tolleson, Executive Director of NDSC. “They are making the requirements of the Kennedy-Brownback bill – providing accurate information about prenatal testing and Down syndrome at the point of diagnosis – stronger on a state by state level. As they succeed, we will be there with our pamphlet to fulfill that requirement.”

“Working with NDSC and NDSS has been so exciting. As a parent, it is heartwarming to see so many excellent organizations coming together working on important global issues that affect hundreds of thousands of people,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation.  “Besides NDSC, NDSS and Global, we now have Down Syndrome Affiliates in Action, the International Mosaic Down Syndrome Association and so many others. I honestly believe that today, more so than any time I have seen in the past, there is such a wonderful sense of passion, purpose, and professionalism in the Down syndrome community. When you put those three ‘p’s’ together, the impact we are having is truly astounding.”

NDSC, NSSS and Global all have important information about prenatal testing and facts about Down syndrome on their websites. To view that information, please visit:

• www.ndsccenter.org/resources/new-and-expectant-parents
• http://www.ndss.org/Resources/New-Expectant-Parents/Understanding-a-Diagnosis-of-Down-Syndrome/
• http://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome

About the National Down Syndrome Congress

Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them.  A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.  Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and, its outreach to individuals from diverse backgrounds.

About the National Down Syndrome Society

Since 1979, the National Down Syndrome Society (“NDSS”) has worked to promote the value, acceptance and inclusion of people with Down syndrome. NDSS has about 350 affiliates nationwide. The NDSS National Policy Center works with Congress and federal agencies to protect the rights of people with Down syndrome, and educates individuals to advocate on local, state and national levels. The largest NDSS public awareness campaign is My Great Story, which ignites a new way of thinking about people with Down syndrome by sharing stories written by and about them. The National Buddy Walk Program includes over 250 walks. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show — the single-largest annual fundraiser benefiting people with Down syndrome.  Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

DENVER/ATLANTA (Nov. 14, 2012) – The Global Down Syndrome Foundation and the National Down Syndrome Congress announced the English and Spanish publication of the first Down Syndrome Prenatal Testing Pamphlet. The hallmark pamphlet will be distributed electronically and in print format nationally through medical professionals as well as available directly to pregnant women and families.

The Down Syndrome Prenatal Testing Pamphlet is intended to eliminate confusion at a time when advice and guidance can vary dramatically from doctor to doctor and counselor to counselor, and where there was previously no accessible, consistent resource for women and families. Recent research shows that the majority of medical students and doctors do not receive adequate training in prenatal diagnosis for Down syndrome and that parents often receive inaccurate information about the diagnosis.

“Although prenatal testing for Down syndrome has been available in the United States since the 1970s, there has not been an easy-to-read, easy-to-update pamphlet available for pregnant women distributed through the offices of medical professionals. The pamphlet that the Global Down Syndrome Foundation and the National Down Syndrome Congress are providing will be a much needed and welcomed resource,” said Nanette F. Santoro, M.D., Chair of the Department of Obstetrics and Gynecology at the University of Colorado School of Medicine.

The pamphlet was designed by a group of medical professionals, researchers, Down syndrome experts and parents over a six-month period. Through the websites, mailing lists and newsletters of the Global Down Syndrome Foundation and the National Down Syndrome Congress, more than 200 respondents from the Down syndrome community weighed in on a draft version of the pamphlet before its finalization.

Michelle Whitten, Executive Director of the Global Down Syndrome Foundation, explains, “Providing prenatal testing information for Down syndrome can be politically charged. But over 90% of survey respondents were on the same page about getting accurate information into the hands of pregnant women, and applauded our efforts. I believe that our organization and the National Down Syndrome Congress have been very respectful about listening to our community’s hopes and fears and providing an even-handed resource. Of course it is important to remember that our number one audience must be pregnant women.”

“We believe that this pamphlet goes a long way in satisfying the 2008 Prenatally and Postnatally Diagnosed Conditions Awareness Act co-sponsored by Senators Edward Kennedy (D-Mass.) and Sam Brownback (R-Kan.),” said David Tolleson, Executive Director of the National Down Syndrome Congress. “Our members and friends have been extremely supportive of this joint initiative with the Global Down Syndrome Foundation and we believe tens of thousands of women and families will benefit from having the current, accurate information presented in the pamphlet.”

The pamphlet also dispels the notion that new non-invasive 10-week blood tests for Down syndrome are diagnostic or 100% accurate. In fact, new blood tests on the market have shown high levels of accuracy only within a defined high-risk population (e.g. pregnant women over the age of 38). These tests are not recommended for women with low-risk pregnancies because their accuracy has not yet been demonstrated.

The Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to measure the impact of the pamphlet through follow-up surveys and to monitor advances in prenatal testing, and the pamphlet will be updated as appropriate. The pamphlet format allows for easy updates and distribution.

Over the next several months, both organizations will be providing additional links and resources associated with a prenatal diagnosis of Down syndrome. For free downloads of the pamphlet or to learn more, visit www.downsyndrometest.org.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show — the single-largest annual fundraiser benefiting people with Down syndrome.  Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

About the National Down Syndrome Congress

Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them.  A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.  Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and, its outreach to individuals from diverse backgrounds.

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Around the world, people with Down syndrome and advocates for them are starting to make inroads in places where there has been little previous attention on medical care and rights for people with Down syndrome.

In Bangladesh this week, the government is planning to fund a trust that would help people with autism, cerebral palsy, Down syndrome and other intellectual disabilities.

The law calls initiatives to ensure employment for the differently-abled and establish their right to inherit property. Every hospital would have a unit dedicated to the people who are targeted by the act.

The government would establish the trust with $12.5 million, with the idea that individual donations can also be made.

For more information on the Bangladesh proposal, click here.

In the African nation of Namibia, the Down Syndrome Association of Namibia was recently established to create an openness in society for people with Down syndrome.

The group estimates there may be only about 1,000 people with Down syndrome in the country, because 35 percent of children with Down syndrome will die before age 3. A lack of information, advocacy and medical care is to blame.

“Unfortunately society … sees the Down syndrome and not the person, although people with DS are people just like you and me,” says Eline van der Linden, a founding member of the association and mother of 5-year-old Namashiku, who has Down syndrome. She spoke to The Namibian.

The association plans to reach out to the government, private sector and the public to change perceptions about people with Down syndrome, facilitate self-advocacy by people with DS and organize activities for people with Down syndrome and their families.

For more information on the Down Syndrome Association of Namibia, click here.

In Turkey, more than 3,000 people joined in parades in Istanbul and Izmir to declare “We Are Here” and promote the inclusion of people with Down syndrome in society.

“I think one of the most important attainments of the works we have made so far is inclusion education and the right for free rehabilitation,” said Gün Bilgin, head of the Down Syndrome Association of Turkey, which organized the event, according to the Hurriyet Daily News.

“They converge on the places they belong; in their classes with teachers and friends. Our youth have started to integrate into society,” Bilgin said.

For more information on the Turkey parades, click here.