Archive for the ‘Blog’ Category

“Dare to” Football & Cheer Camps Inspire Crowds

June 3rd, 2015 by Global Down Syndrome Foundation

Athletes with Down syndrome will punt, pass, and cheer at Global’s Dare to Play Football and Cheer Camps with Ed McCaffrey and the Denver Broncos Cheerleaders

Dare to Play
Dare to Cheer

Join the Global Down Syndrome Foundation on Game Day and celebrate amazing self-advocates in Global’s Dare to Play Football Camp with Ed McCaffrey and
Dare to Cheer Camp with the Denver Broncos Cheerleaders!

Saturday, June 20, 2015, 10:30am – 2:00pm
Valor Christian High School
3775 Grace Blvd., Highlands Ranch, CO 80126

The Global Down Syndrome Foundation launched the Dare to Play Football Camp and the Dare to Cheer Camp for individuals with Down syndrome in the summer of 2010. The camps have served 500 people with Down syndrome. Each year, the camps include three practices that culminate with a Game Day at Valor Christian High School. During the game and at halftime, the campers get to show off their skills to an audience of more than 400 people.

“Sebastian had an amazing time at the camp and still talks about his pal Marcus. Our entire family enjoyed Game Day immensely! I could go on and on about the awesomeness of the day.” – Jane Hoppens

Football players from Valor Christian High School serve as “Pals” for the Dare to Play Football campers, while members of the Denver Broncos Cheerleaders help teach cheerleading routines, drills and dance moves to the Dare to Cheer campers. On Game Day, they are joined by celebrity coaches such as current and former Denver Broncos Ed McCaffrey, Orlando Franklin, Malik Jackson, Al Wilson, Mark Schlereth, and Brian Dawkins.

Join in the festivities this year! Game Day runs from 10:30am to 2:00pm on Saturday, June 20, ending with a Community Celebration Party!

Registration for Global’s Dare to Cheer Camp has closed, but registration is still open for Global’s Dare to Play Football Camp. Register today!

View photos from past Game Days to preview the excitement.

WA Post Profiles Global’s DS-Alzheimer’s Work

June 2nd, 2015 by Global Down Syndrome Foundation

Gretchen Josephson with her book Bus Girl
Gretchen Josephson with her book Bus Girl

The Global Down Syndrome Foundation (Global), the Linda Crnic Institute for Down Syndrome (Crnic Institute) and the national Alzheimer’s Association co-sponsored a seminal workshop calling attention to the connection between Down syndrome and Alzheimer’s disease. This important workshop was profiled in The Washington Post.

The workshop is one of many collaborations between Global, the Crnic Institute and the national Alzheimer’s Association. In 2013, the three organizations established the “Down Syndrome – Alzheimer’s Disease Investigator Program.” $2.2 million has been committed to this effort so far with initial awards funding promising research to the following scientists:

Eitan Okun, Ph.D., Israel
Ann-Charlotte Granholm, Ph.D., SC
Huaxi Xu, Ph.D., CA
Karen Chang, Ph.D., CA
Donna Wilcock, Ph.D., KY

Crnic Institute Director of Alzheimer's Research Dr. Huntington Potter
Crnic Institute Director of Alzheimer’s Research
Dr. Huntington Potter

Global and the Crnic Institute have made the important connection between Down syndrome and Alzheimer’s disease a priority. In 2012 the Crnic Institute hired Huntington Potter, Ph.D., international expert in Alzheimer’s disease who discovered the mechanistic relationship between Alzheimer’s and Down syndrome. Dr. Potter has been involved with the national Alzheimer’s Association since 1987.

The Crnic Institute and Global work closely with key scientific leadership at the national Alzheimer’s Association including Maria C. Carrillo, Ph.D., Chief Scientific Officer and Dean M. Hartley, Ph.D., Director of Science Initiatives, Medical and Scientific Relations. The Alzheimer’s Association was key in bringing together experts from around the world to the Down Syndrome-Alzheimer’s Disease Workshop including representatives from the National Institute on Aging and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Sponsors of the Down Syndrome-Alzheimer’s Disease Workshop

Alzheimer's Association logo Linda Crnic Institute for Down Syndrome
Global Down Syndrome Foundation logo
lumind logo lejeune logo down-syndrome-achieves

Global’s Survey to Benefit Adults with DS

May 30th, 2015 by Global Down Syndrome Foundation

Adults with Down syndrome

The Global Down Syndrome Foundation is planning to open their first Adult Down Syndrome Medical Center, Summer of 2016, which will be located in Colorado. ‎This new Center will complement Global’s existing affiliates — the Crnic Institute and the Sie Center for Down Syndrome — in providing a spectrum of research and medical care to the Down syndrome community.

Global has created a nearly 70 member Task Force made up of many renowned medical professionals, activists, and self-advocates from across the country to help them establish this world-class medical center for adults with Down syndrome.adult Part of the Task Force’s recommendation is to get input from self-advocates and their families. To this end, Global has engaged Catalyst Healthcare Research to conduct a survey regarding the healthcare needs and lifestyles of adults with Down syndrome. Clearly, it is very important for Global to hear directly from self-advocates and their families about this medical center.

If you would like to participate and take the survey please click your language of choice. The survey can be taken in either English or Spanish.

All survey responses will go directly to Catalyst Healthcare Research and will be encrypted to protect respondent’s anonymity. Names and contact information WILL NOT be shared with any organization involved with the research, unless a respondent personally elects to participate in future Global-related studies (this option is available at the end of the survey).

Glee Stars Shine

May 30th, 2015 by Global Down Syndrome Foundation

The hit TV show is over, but we can’t get enough of Jane Lynch and Lauren Potter, who dish about the show and their relationship in our Spring issue.

Enjoy a sneak peak of our Spring edition of Down Syndrome World™, the award-winning magazine of the Global Down Syndrome Foundation.

Letter from the Editor

DSW Spring cover

Spring is often compared to renewal. With this third edition of Down Syndrome World™, I hope you will feel like part of a renewed commitment to action. That you will be delighted and perhaps even amazed by the work being carried out by and for individuals with Down syndrome.

Become a Global Member
for just $20 a year and enjoy 4 issues of
Down Syndrome World™ Magazine

Think about the progress we are making! Just five years ago the idea of Down syndrome research seemed far-fetched. Today the Linda Crnic Institute has 29 labs and over 100 scientists working on Down syndrome. In this issue we are proud to present a feature on how Down syndrome research could potentially cure cancer.

For our part, we are proud to announce Down Syndrome World™ received the 2015 Gold Aster Award – we are the first Down syndrome publication to ever receive an Aster award! The award is one of the highest recognitions in the healthcare marketing and advertising field. So please keep your letters, support and photos coming.

Michelle Sie Whitten
President and CEO, Global Down Syndrome Foundation
Editor/Publisher, Down Syndrome World

Global 2015 Ambassador Clarissa Joann Capuano

May 30th, 2015 by Global Down Syndrome Foundation

Global is delighted to announce our 2015 Ambassador, Clarissa Joan Capuano. She will rock the runway at our 2015 Be Beautiful Be Yourself Fashion Show on Saturday, October 24.

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Reserve your table or tickets now!

New Venue!
Colorado Convention Center

Saturday, October 24, 2015
For more info please call 303.321.6277
 
Jamie 2015 BBBY Runway

Global Friend Jamie Foxx Releases New Album

May 19th, 2015 by Global Down Syndrome Foundation

Global Down Syndrome Foundation supporter and Quincy Jones Exceptional Advocacy Award recipient Jamie Foxx is headed back to the Billboard charts.

The multi-talented R&B star released “Hollywood: A Story of a Dozen Roses” on May 18.

Foxx’s sister DeOndra Dixon, a Global Ambassador and fellow Quincy Jones Award winner, undoubtedly approves of the new album title. Dixon has seen Hollywood up close and personal. She is a star in her own right, having appeared in Foxx’s music video for “Blame It,” and having danced on stage at the Grammys. In addition, Dixon models each year at the Be Beautiful Be Yourself Fashion Show aside such celebrities as Alec Baldwin, and has graced the front cover of Down Syndrome World magazine.

Jamie Foxx and sister, DeOndra Dixon, for People MagazineWhen Foxx announced the release of “Hollywood” last month on “Jimmy Kimmel Live,” he talked about how much his sister enjoys spending time with R&B star Chris Brown. Brown joins Foxx for the already-released single “You Changed Me” on the album.

“Some of the things that people don’t get to see Chris on the inside like when he comes and dances with my sister who has Down syndrome for hours,” Foxx told Kimmel.

Foxx is a five-time Grammy nominee, and won Best R&B Vocal Performance by a Duo or Group for “Blame It.” He is also an Oscar-winning actor.

“Hollywood” is his first album since 2010’s “Best Night of My Life.”

Watch Jamie Foxx talk to Jimmy Kimmel about DeOndra Dixon and the Global Down Syndrome Foundation

Watch Jamie Foxx’s acceptance speech for the 2012 Quincy Jones Exceptional Advocacy Award:

Watch Jamie Foxx sing to Global co-founder Anna Sie at the 2014 Be Beautiful Be Yourself Fashion Show:

Actor with DS Stars in New Feature Film

May 8th, 2015 by Global Down Syndrome Foundation

“Where Hope Grows” hits theaters May 15. David DeSanctis is the first actor with Down syndrome to land a leading role in a wide-release movie.

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“Where Hope Grows,” the first feature film to star an actor with Down syndrome in a leading role, opens in wide release on May 15, and for first-time actor David DeSanctis, it’s the fruition of a long but rewarding experience.

The movie tells the story of a grocery-store clerk who goes by the name Produce, played by DeSanctis. Produce strikes an unlikely friendship with Calvin (Kristoffer Polaha), an alcoholic, burned-out baseball player, and becomes a guiding role for Calvin’s transformation. It’s a movie about relationships and the transformative power of true friendship.

DeSanctis, who is a 22-year-old with Down syndrome from Louisville, Kentucky, found solace in music as he worked extended days on the movie set while making the film.

“I have to learn how to wait on the long hours,” he said. “I worked 12 to 14 hours a day.”

DeSanctis loves music and dancing, and that passion was infectious to the rest of the cast and crew. The music played a big role in bringing DeSanctis, and the rest of the cast, together. For a taste of the camaraderie, be sure to stick around for the end credits after the movie.

Director Chris Dowling said the movie producers created a playlist of songs based on what DeSanctis liked, and they paired the playlist with different scenes in the movie. Then, when days would drag on and filming would run late, the music would break out.

“We might be rushed for time but we’d have a conga line break out in the middle of the grocery store at 11:30 at night,” Dowling said. “David’s a very happy guy, but there are also times where he can get overwhelmed.” The music served as a way for DeSanctis, and the rest of the cast, to refocus.

In preparation for the film’s wide release on May 15, movie screenings have been held across the United States. On May 4, “Where Hope Grows” got a red-carpet premiere in collaboration with Special Olympics in Los Angeles. Global Down Syndrome Foundation sent two self-advocates and their guests to attend and walk the red carpet. In addition, Global supporters were invited to a special screening of “Where Hope Grows” in the Denver area in April that included a Q&A with Dowling.

“Where Hope Grows” was an Official Selection of the 2014 Dallas International Film Festival, and received the Audience Choice Award at the Heartland Film Festival in Indianapolis.

Want to see the movie? Click here to learn more about theaters in your area that will be showing the film.

Learn more about DeSanctis, the movie and what Dowling hopes the impact of the film will be – all in the upcoming issue of Down Syndrome World magazine. Become a member of the Global Down Syndrome Foundation to receive Down Syndrome World.

Global Down Syndrome Foundation Congressional Briefing
Congresswoman Cathy McMorris Rodgers

Global Down Syndrome Foundation Congressional Briefing
Crnic Institute Director of Alzheimer’s Research Dr. Huntington Potter

Global Down Syndrome Foundation Congressional Briefing
Dr. Potter with Maria Bonilla, Karina Bonilla, Jose Moreno-Campuzano, Maria Campuzano and Sahid Morano-Campuzano

Global Down Syndrome Foundation Congressional Briefing

Congressional Down Syndrome Caucus Briefing

Co-organized by the Global Down Syndrome Foundation, the Congressional Down Syndrome Caucus Briefing was held at the U.S. Capitol on April 22. The briefing, entitled “21st Century Advances in Down Syndrome Research Advocacy,” attracted over 40 people, including Members of Congress, congressional staff, self-advocates, family members and Down syndrome community leaders.

Speakers were represented by Global and the Linda Crnic Institute for Down Syndrome, including world-renowned Alzheimer’s scientist Dr. Huntington Potter. Speakers also came from the National Down Syndrome Society, National Down Syndrome Congress, and LuMind Research Down Syndrome Foundation.

Congresswoman Cathy McMorris Rodgers, Global Down Syndrome Foundation’s Quincy Jones Exceptional Award recipient, kicked off the briefing, highlighting the need to focus on research and medical care for people with Down syndrome now that the ABLE Act is passed. She referenced the 21st Century Cures Act as a possible vehicle for increased funding. The Act is a bipartisan, multi-agency initiative with the goal of accelerating the discovery, development and delivery of promising new treatments for diseases and conditions.

NIH Meeting – “Outcome Measures for Clinical Trials in Individuals with Down Syndrome”

Led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health, this meeting convened over 40 experts including Down syndrome basic researchers, behavioral specialists, and clinicians, representatives from Roche pharmaceuticals, NIH leaders, Food and Drug Administration leaders, and specialists from other conditions such as Autism and Fragile X.

Global and Crnic representatives were key participants in this meeting.

Participants divided into working groups to identify measures that would be appropriate for testing children and adults with Down syndrome. Dr. Potter participated in both the cognition and medical/physical working groups, and discussed some of the potential biomarkers that could be tested to see if drugs are having an effect. Colorado State University behavioral and cognition specialist Dr. Debbie Fidler was a leading expert on the behavior working group.

The meeting was an important step toward addressing the priorities in the recently released NIH Down Syndrome Research Plan. Meeting participants will continue their hard work on this topic, and the NIH will publish the meeting outcomes in the coming year. Of course, more funding is needed to fulfill the goals of this plan, and Global is working hard in collaboration with other national Down syndrome organizations to increase funding for Down syndrome research.  

Young Munich Couple Visits Denver & Global

May 6th, 2015 by Global Down Syndrome Foundation

Aurel is a beautiful boy who happens to have Down syndrome. His parents, Aina Dressler and Robert Conle, share their personal story of hope, love and family.

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Aurel and Aina

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Nayantara Ghosh-Ersek and Benan Ersek with Laura Dern and John C. McGinley

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1. How did you feel when you learned Aurel happened to have Down syndrome?

The diagnosis was a shock to both us, since we had no idea this would happen. We were told about 3 hours after he was born, and it was the last thing we expected to happen. Even worse though was when we were told the next day he would need a major open-heart surgery.

2. Have your feelings changed since that initial discovery?

Of course we loved him from the start, but initially there were so many feelings of fear, and a lack of knowledge about what it means for our child to have Trisomy 21. After his successful heart surgery, his great recovery and amazing progress, our worries have been greatly reduced.

3. What has surprised you about Aurel? How has he changed your lives?

He has totally surprised us with his amazing joyfulness and positive charisma. Since he is our first child, he has probably changed our lives entirely like any typical child would do – right? ☺

4. Aurel has grandparents in Denver, Hikmet Ersek and Nayantara Ghosh-Ersek. What relationship do they have with Aurel, and how has your extended family reacted to the diagnosis of Down syndrome?

Aurel is very close to his grandparents. We all spent a month together in Denver. When we are in Munich, we stay in touch via Facetime- which Aurel absolutely loves. The reaction of our families was just like ours, and they gave us all the support we needed. Throughout the past year they have been a great help and supported us in every way they could.

5. You recently visited the Sie Center for Down Syndrome at Children`s Hospital Colorado. How was that experience?

It was an outstanding experience. In Europe we have not found such a specialized support for Down syndrome at such a professional level.

6. Why is the work of the Global Down Syndrome Foundation important?

From our point of view it is important to spread the awareness for people with Down syndrome. Now that we are parents of Aurel, we realize the general society (including us one year ago) knows so little about the lives and capabilities of people with Down syndrome. Global Down Syndrome Foundation has found the right way to raise interest by showing society the talents, capabilities, hopes and interests of people with Down syndrome, spreading empathy and reducing ignorance. Also they finance scientific research on Down syndrome, a field neglected by the medical industry.

7. Having been to Denver. do you think there are cultural differences between how people react to Aurel in this city versus Vienna (where Aurel was born) versus Munich (where he lives now)?

Not really. Aurel is such a charming child that everyone likes him right away regardless of where we are. However we see cultural differences when there are abstract discussions about children with Down syndrome. Sometimes in Europe people refer to them as “disabled people.” In Denver we only heard the term “children with special needs,” which fits much better.

8. What do you want people to know about Aurel?

That he is the bravest among the three of us. After his open-heart surgery he was playing with toys 3 days after the surgery. The nurses could not recall any recovery within so little time.

9. What are your hopes and dreams for Aurel?

We just want him to be happy and enjoy life and be able to help him grow up to be a young and confident child and later on a grown-up who can achieve everything he wishes for.

10. Anything else you would like to add?

We would like to thank our families and close friends for all their help and support and love and would like to let them know we probably wouldn´t be where we are today without them. It was one of the most difficult and challenging years we have ever experienced and are so grateful for them just being there for us no matter what. Also we would like to thank the Whitten family for their support and the amazing team taking care of us at the Sie Center. It was one of the most eye-opening experiences we have ever had and are so grateful that we had the chance to meet you all! There is absolutely no comparison to the Sie Center here in Europe and we are very humbled that we were welcomed by you with open arms and embraced with so much care and knowledge and also love. Thank you!!!

A Life of Delight, Surprise, and Inspiration

April 9th, 2015 by Global Down Syndrome Foundation

Louis “Louie” Rotella IV’s unfiltered and unfettered approach to life is a constant source of inspiration to his family

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This article is an excerpt from Down Syndrome World magazine, a publication of the Global Down Syndrome Foundation. To receive Down Syndrome World, become a member of the Global Down Syndrome Foundation today at www.DownSyndromeWorld.org

Rotella FamilyFourteen-year-old Louie IV was born into baking royalty — his family has owned and operated Rotella’s Italian Bakery Inc. in Omaha, Nebraska, since 1921. When Louie was born with Down syndrome, his great-grandfather and the family’s patriarch, Louis Rotella Sr., provided the reassurance the boy’s parents needed.

“Right after the doctors told us Louie had DS, Louis Sr. tapped me on the cheek like full-blooded Italians do, looked me in the eyes, and said, ‘Keep your head up. Things are going to be fine,’ ” Louie’s dad, Louis III, said. “That was a huge relief. He let me know we had the whole family’s support from the very beginning.”

‘Life doesn’t need to be so complicated’

Louie’s support network now includes his siblings, 12-year-old Mia and 7-year-old Niko.

“Mia is a most intelligent girl who greatly benefits from Louie’s presence and helps my husband and me manage his Type I diabetes,” said Louie’s mom, Jill. “Niko enjoys being around Louie but has to be patient at times when he tries to play with his brother.”

Life in the Rotella home resembles that of most families in many respects.

“We do lots of typical things as a family, including going to church, family functions, sporting events, and out to eat,” Jill said. “Louie — and all of us — are lucky to have such a strong support system in each other.”

Jill marvels at her oldest son’s uninhibited, unbiased outlook.

“Louie teaches us that life doesn’t need to be so complicated; it can be simple and pure,” she said. “He is one of the only students in his middle school class who blows kisses to his mother at school in the morning.”

Louie loves swimming, music, and dancing and at tends a full-inclusion school. His first method of communication was American Sign Language, and he remains so fond of it that he hopes to help teach it in a daycare one day. In the meantime, he’ll keep delighting, surprising, and inspiring a family that can’t imagine life without him.

A Love Story

Little King and His Marshmallow KingdomLouis Rotella III and Louis “Louie” IV share more than a name and the love of father and son — they’re also forever linked by a creative advocacy project.

In 2010, Louis III published The Little King and His Marshmallow Kingdom, a children’s book he wrote based on his son’s life that teaches young readers about the beauty of differences in others and the value of acceptance.

“Writing the book was a way to honor Louie IV and say, ‘I love you,’” Louis III said. “The book conveys that it’s perfectly fine to be unique and that uniqueness should be celebrated. Louie and I got to do a lot together because of the project, like give presentations and sign autographs. Our bond grew stronger, as did our message to others.”

The Little King and His Marshmallow Kingdom (Ata-Boy Productions Inc., 2010) is available at Amazon