Archive for the ‘Blog’ Category

Kylee Nevergall, right, walks the runway at the 2008 fashion show.

The Global Down Syndrome Foundation recently encouraged the friends, supporters and colleagues on our mailing list to update their contact information, and we’re pleased to announce that Michelle Nevergall is the winner of a random drawing for an iPad among those who responded.

Michelle and her husband, Troy, are the parents of 19-year-old Kylee and 17-year-old Dylan. Kylee, who graduated in May from Ralston Valley High School in Arvada, Colorado, has Down syndrome. Dylan is in his senior year at Arvada West High School.

Kylee was a model in the Global Down Syndrome Foundation’s inaugural fashion show, and her parents say she still talks about the experience today.

Michelle says Kylee loves to cook and, most of all, eat. She also loves country music, books and movies. Now that her brother can drive, spending time with him is one of her favorite ways to spend an afternoon. She loves being with her cousins and her grandparents.

“As Kylee enters into young adulthood, we can look back on all that she has accomplished and take pride in the person that she has become and watch with awe at the amazing dreams that she has for her life,” Michelle says. “We can’t wait to see where she is several years from now. Anything is possible!”

Michelle says Kylee is working on using her phone to keep track of her calendar and remind her of appointments.

“As technology continues to improve and become a bigger part of our lives, we feel like it is important for Kylee to know her way around a computer,” she says. “This iPad will be a great tool in teaching Kylee and working on her technology skills.”

Michelle is a former member of the board of directors for the Mile High Down Syndrome Association. She and Troy were involved with new-parent visitations through MHDSA and also ran a parent support group out of their home.

Congratulations to Michelle Nevergall and her family!

Today, Dec. 3, marks the International Day of Persons with Disabilities, and this year’s theme is “Removing barriers to create an inclusive and accessible society for all.”

U.N. Secretary-General Ban Ki-Moon announced that the U.N. General Assembly will hold a High-Level meeting on disability and development next year.

“Persons with disabilities have a significant positive impact on society, and their contributions can be even greater if we remove barriers to their participation,” Ban said. “With more than one billion persons with disabilities in our world today, this is more important than ever.”

U.S. President Barack Obama issued a declaration that “even as we partner with countries across the globe in affirming universal human rights, we know our work will not be finished until the inherent dignity and worth of all persons with disabilities is guaranteed. Today, let us renew our commitment to meeting that challenge here in the United States, and let us redouble our efforts to build new paths to participation, empowerment, and progress around the world.”

Events were planned around the world to mark the event. Click here for a listing of some of the awareness-raising activities.

One such event was in Taiwan, where differently-abled children and adults performed over the weekend, showcasing African dance, wheelchair ballroom dancing, and saxophone and jazz drum music.

Chen Yi-ming, who has Down syndrome, performed ballroom dancing with his mother, Hsu Mei-hui.

Hsu told Focus Taiwan news agency that “I hope to show other families with disabled children that these children are capable and not as difficult to teach as imagined. The point is to give them a stage.”

Another story to focus on today involves Glen Niles, a former officer in the Trinidad and Tobago Coast Guard who co-founded the Down Syndrome Family Network, which gives parents and caregivers of people with Down syndrome access to resources, support and answers.

Read an inspiring question-and-answer article with Niles at Guardian Media.

Thanks to everyone who makes awareness of issues facing the differently-abled a priority, not only today, but every day!

For more information about the International Day of Persons with Disabilities, check out this webpage from the U.N.

The Alzheimer’s Association, the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation today launched a new research initiative to better understand the development of Alzheimer’s disease in individuals with Down syndrome (DS) and translate the research into improved treatments for people at risk to develop Alzheimer’s.

The organizations are making a total of $1.2 million available for new research projects, and have issued a Request for Applications (RFA) titled Understanding the Development and Devising Treatments for Alzheimer’s Disease in Individuals with Down Syndrome.

“Through this new initiative, we hope to better understand the mechanisms that lead to Alzheimer’s in people with Down syndrome in order to get us a big step closer to new treatments,” said William Thies, Ph.D., Alzheimer’s Association chief medical and scientific officer. “The eventual goal is to advance the charge toward better Alzheimer’s therapies for people with Down syndrome and for people without it.”

“We’re pleased to have leaders that represent a significant scientific brain trust leading this program, and we are grateful to have the scientific review apparatus and peer reviewers provided by the Alzheimer’s Association,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation.

To read the full press release, click here.

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.

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.

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.

It’s Election Day, and get-out-the-vote efforts are in full swing. But unfortunately for many people in the Down syndrome community, there are limits on their right to vote.

A recent article in The Atlantic talks about the difficulties that many people with Down syndrome and their families face when seeking the eligibility to vote. The constitutions of about 30 states and the District of Columbia spell out limits on voting rights for people who have been ruled “mentally incapacitated,” or incompetent, by a court.

And the rules can vary greatly state-by-state, meaning people with Down syndrome who are eligible to vote in one state would lose that right if they moved across the border to another state. Click here for a state-by-state breakdown on regulations.

In the Atlantic article, Temple University professor Mark Salzer says these laws are outdated and propagate stigmas about people with mental disabilities.

“They think that if you have a mental illness — and they use the term broadly — then your rationality is impaired and you shouldn’t be able to vote,” Salzer told The Atlantic.

But some progress is being made. In Arizona, a law that took effect Aug. 1 granted those under full guardianship the right to vote after they appear before a judge to determine competency. The case was prompted by Clinton Gode, 25, who had fought for the right to vote since he was 18. The local judge found that Gode, who has Down syndrome, is capable of making his own choice about whom to vote for in the coming election and granted him the right. To read more about Gode’s triumph, click here.

The Wellcome Trust has awarded the London Down Syndrome Consortium with 2.5 million pounds (nearly $4 million) for a Strategic Award to understand the processes involved in Alzheimer’s disease that often occurs as people with Down syndrome age.

Dr. André Strydom, the Principal Applicant from University College London, said: “This project brings together researchers from different disciplines to tackle the cognitive problems associated with Down Syndrome. We want to understand why people with Down Syndrome are much more likely than the general population to develop Alzheimer’s disease (dementia), and we will also look for markers that can identify those who go on to develop dementia before they present with problems.”

The project, which will be a five-year study starting in December, involves research by leading geneticists, psychiatrists and neuroscientists who will be working closely with the Down’s Syndrome Association and the Down’s Syndrome All Party Parliamentary Interest Group. The project also includes North American and European collaborators to ensure the research is standardized for international programs.

The ties between Alzheimer’s disease and Down syndrome are getting fresh attention around the globe.

In the United States, the Global Down Syndrome Foundation and the Alzheimer’s Association hosted the first-ever scientific workshop to bring together researchers from both fields to plot how the two conditions can be studied together.

And the Linda Crnic Institute for Down Syndrome, the first academic home for Down syndrome research in the U.S. and a major source of the Global Down Syndrome Foundation’s support, recently hired renowned Alzheimer’s researcher Dr. Huntington Potter.

To read more about the Wellcome Trust’s research award, click here.

The Wellcome Trust is a global charitable foundation dedicated to achieving improvements in health by supporting the brightest minds in biomedical research and the medical humanities.