Archive for the ‘Blog’ Category

Jamie Foxx, on Life with His Little Sister, DeOndra

February 10th, 2015 by Global Down Syndrome Foundation

In addition to being an all-star of her own accord, DeOndra Dixon is the youngest sister of Academy Award-winning actor and Grammy Award-winning singer Jamie Foxx.

Down Syndrome World
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

Oscar and Grammy winner Jamie Foxx is a triple threat as an actor, musician and comedian, and he’s also a great big brother to self-advocate DeOndra Dixon. Foxx, who is a Global Down Syndrome Foundation Quincy Jones Exceptional Advocacy Award recipient, recently spoke with us about DeOndra and how she’s earned her own place in the spotlight.

Q: Describe DeOndra for us.

A: She speaks her mind and knows that there’s nothing she can’t do. She has such a special quality, and she can light up a room. I don’t know where she gets it. It’s amazing.

Q: DeOndra’s a wonderful self-advocate. She speaks and learns well. What has contributed to her success?

A: It’s the way our family treats her. With DeOndra, we let her jump in the water and swim a little bit, so to speak. Our family just treats her like DeOndra. She goes everywhere we go. She’s usually the life of the party! I attribute a lot of that to my mother. She was the one who was making sure DeOndra went to school and got to be involved in all the activities. She always said, “Get out there and do your thing! Go to school, play, have fun — there’s nothing different about you!”

Q: What’s so special about DeOndra being a Global Down Syndrome Foundation Ambassador?

A: The Global Down Syndrome Foundation has changed my sister’s life. She’s so proud of what she does for the organization. She feels whole, and that’s the most important thing.

Q: What do you hope for DeOndra’s future?

A: That she can live her life with no boundaries, like she’s living it now. There’s nothing she can’t do.

Read the complete interview with Jamie and a profile of DeOndra in the inaugural issue of Down Syndrome World! Sign up as a member of the Global Down Syndrome Foundation and receive the first national quarterly magazine for the Down syndrome community.


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

Watch Jamie brag about DeOndra on the Queen Latifah Show:

Crnic Institute begins undergraduate scholarships

February 10th, 2015 by Global Down Syndrome Foundation

for students interested in Down syndrome research. They complement the graduate and postdoctoal fellowships organized by Crnic and funded by Global.

Darian Williams, Crnic Institute for Down Syndrome undergraduate scholarship recipient

Darian Williams, Crnic Institute for Down Syndrome undergraduate scholarship recipient

A new Undergraduate Scholarship Program being offered through the Linda Crnic Institute for Down Syndrome and the University of Colorado has the potential to expand existing Down syndrome research and get a new generation of undergraduates interested in studying Down syndrome.

Darian Williams, a 20-year-old molecular, cellular, and developmental biology major at CU, is the first recipient of the Crnic Institute’s undergraduate research scholarship. Darian works in the laboratory of Bradley Olwin, Ph.D., a recipient of a 2014 Crnic Institute Grand Challenge Grant for his work on mechanisms of muscle dysfunction in Down syndrome. In addition to that work, Dr. Olwin researches muscular dystrophy and other muscle-related disorders.

“Our lab focuses on muscle stem cells, which are responsible for muscle repair and are often altered in conditions such as Down syndrome,” Williams said. “In our previous muscular dystrophy research, we used Ts65 mice, which exhibit many of the same characteristics as individuals with Down syndrome. Our preliminary experiments showed that these mice had defects in muscle stem cells, and we wanted to use that to better understand the function of these cells in individuals with Down syndrome.”

Expanding the Crnic Institute’s Reach

This is the first year the Undergraduate Scholarship Program has been offered through the Crnic Institute, and the pool of applicants included CU undergraduates interested in Down syndrome research.

“A combination of things made this possible, and one is certainly the funding we receive from the Global Down Syndrome Foundation,” said Tom Blumenthal, Ph.D., Executive Director of the Crnic Institute. “The other is the scientific problem itself. The available tools that can help us understand how the third copy of chromosome 21 causes all that it does are dramatically increasing. We’ve now reached a point where a concerted effort can enable us to understand the condition, and hopefully to intervene.”

Making Scientific Progress

The reality is that conducting biomedical research is increasingly expensive and requires a great deal of financial resources, Dr. Blumenthal noted. Through Global’s support, the Crnic Institute has gone from partnering with just two labs at the University of Colorado to partnering with 24.

The undergraduate scholarships come in addition to the existing Crnic Institute Grand Challenge Grants, which have provided $2.5 million to 27 research projects. Also, the Crnic Institute-affiliated Sie Post-Doctoral Fellowship Program at the BioFrontiers Institute funds three post-doctoral researchers. Recipients of these grants focus their work on medical and cognitive issues in individuals with Down syndrome, such as optic development and genetic analysis of autoimmunity.

“Our purpose is to make scientific progress,” Dr. Blumenthal said. “We hope that increasing the number of openings in our labs for interested undergraduate researchers helps us accomplish that.”

Dr. Blumenthal is excited about the future of Down syndrome research.

“We’re suddenly able to track this extra chromosome, where we weren’t before,” Dr. Blumenthal said. “It’s a matter of putting good money behind good science.”

Learn more about the research being funded by Global by checking out our Research & Medical Care section.

First T21 Research Society conference in Paris

February 10th, 2015 by Global Down Syndrome Foundation

The Global Down Syndrome Foundation is proud to announce that it has helped establish and is a Founding Member of T21 Research Society (T21RS) — the first international research society focused on Down syndrome.

Paris
 
Trisomy 21 Research Society

T21RS was founded to promote basic and applied research on Down syndrome, stimulate translational research and apply new scientific knowledge to develop improved treatments for people with Down syndrome and cures for diseases associated with the condition such as Alzheimer’s disease.

One of the society’s first major initiatives is the inaugural T21RS International Conference: Changing paradigms in Down syndrome, to be held in Paris from June 4 to 7 at the Brain and Spine Institute of the Salpêtrière hospital.

This conference will bring together renowned researchers, postdoctoral fellows and students from around the globe to share the latest scientific developments in the field of Down syndrome research. In addition, there will be a session with parents associations on Sunday, June 7.

“We are proud to have helped establish the Trisomy 21 Research Society. It is really an extension of Global’s commitment to greatly expand research benefiting people with Down syndrome,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “We are confident this new society will dramatically increase the number of scientists working on Down syndrome and therefore increase the number of breakthroughs we can witness in our lifetime.”

Jean Maurice DelabarThe society will have a rotating presidency. The first president is Jean Maurice Delabar of Université Paris Diderot, who says the society’s membership is expected to double by the end of its second year after already exceeding its first-year goal in the initial six months.

Delabar will be followed by Roger Reeves, PhD, of Johns Hopkins University School of Medicine and a member of the Scientific Advisory Board for the Linda Crnic Institute for Down Syndrome.

Roger ReevesReeves is a core faculty members of the McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins and is considered one of the foremost experts in the field of gene expression in Down syndrome. Recent work by Reeves includes studies to identify what genetically contributes to the severity of cognitive and coordinative problems associated with Down syndrome in order to pursue therapies that could improve the lives of people with the condition.

Tom BlumenthalAlso serving on the society’s advisory board and one of the founders of the society is Tom Blumenthal, PhD, Executive Director of the Crnic Institute. Blumenthal’s lab studies the mechanisms of gene expression and how genes are organized on chromosomes. He is a fellow of the American Academy of Arts and Sciences, one of the nation’s most prestigious honorary societies.

Katheleen GardinerThe Crnic Institute’s Katheleen Gardiner, PhD, serves on the society’s Program Committee. Gardiner’s research focuses on protein expression in mouse and human model systems of Down syndrome, and she has organized the last two international conferences on Down syndrome and the biology of human chromosome 21 in Washington, DC.

Besides Global, founding supporters of the society include the Jérôme Lejeune Foundation, Lumind Foundation, Trisomy 21 France, and The Matthew Foundation.

Because Down syndrome research has generated findings that affect thinking regarding research on Alzheimer’s disease and solid tumor cancers, T21RS creates another forum for drawing attention to the need for further funding for Down syndrome research, which could in turn benefit everyone’s lives. Global and the Crnic Institute are at the forefront of this research and look forward to helping place a greater emphasis on collaborations worldwide.

For more information, go to t21rs.org.

Fashion designer Roberto Coin supports Global

January 5th, 2015 by Global Down Syndrome Foundation

through long-time Global partner Hyde Park Jewelers. A recent dinner with the famous Italian jewelry designer and thought-leader raised nearly $20,000.

Roberto CoinInternationally renowned jewelry designer Roberto Coin lent his help to benefit the Global Down Syndrome Foundation on December 10, 2014, as long-time Global partner Hyde Park Jewelers hosted a benefit dinner.

A portion of the proceeds from the dinner, at Pasta Pasta Pasta in Denver’s Cherry Creek North, went to Global, resulting in a gift of nearly $20,000. It’s the latest contribution in a long line of support from Hyde Park Jewelers. Hyde Park owners Shereen & Michael Pollak announced at the event that Hyde Park will continue to provide marquee items for the live auction at Global’s Be Beautiful Be Yourself Fashion Show. Past live auction gems from Hyde Park Jewelers have included trips to the Kentucky Derby paired with exclusive Longines watches, and a trip to Geneva, Switzerland, paired with an exclusive timepiece from Vacheron Constantin.

Michael and Shereen Pollak with Helen Hunt

Michael and Shereen Pollak with Helen Hunt

Hyde Park Jewelers is one of the top 25 independent jewelers in the nation, with headquarters in Denver and stores at Denver’s Cherry Creek Shopping Center, Las Vegas and Phoenix.

Roberto Coin is one of the most sought-after jewelry brands in the world. From the Roberto Coin website:

In 1977, Roberto Coin founded the company that would bear his name in Vicenza, the city of Gold. Initially, the company was intended for production on behalf of some of the most prestigious brands of international fine jewelry. The Roberto Coin brand was launched in 1996. Success was quick and extraordinary. By 2000, only four years after the brand’s birth, Roberto Coin positioned itself seventh amongst the best-known jewelry brands in the United States. Two years later in 2002, the brand ranked third in the international panorama and first among Italian jewelers. The headquarters is in Vicenza, Italy and is assisted by foreign branches as well as by Roberto Coin Inc. on Fifth Avenue in New York City.

Hyde Park Jewelers-Roberto Coin fundraiserHyde Park features a Roberto Coin boutique at its Denver location and says of the jewelry: Roberto Coin jewelry was the first to make use of three color gold which rapidly became a fashionable jewelry trend worldwide. Roberto Coin designs are known for their innovative craftsmanship and trendsetting use of color, whether rose, yellow or white gold or colored gemstones. The Roberto Coin design team uses age-old jewelry design techniques with modern innovations to create his famous necklaces, earrings and more.

Global is thankful for the support of Hyde Park Jewelers and Roberto Coin and looks forward to continuing partnerships in the future.

Renowned expert Patricia C. Winders shares her views

January 4th, 2015 by Global Down Syndrome Foundation

on the Sie Center for Down Syndrome at Children’s Hospital Colorado and her hopes for children with Down syndrome

Down Syndrome World
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

Pat Winders

Described by her colleagues as “the most respected person in the field of Down syndrome and physical therapy,” Winders belongs to a passionate team of experts and empowers thousands of children with Down syndrome. Winders, Senior Physical Therapist and Director of Therapies at the Sie Center, is a kind, patient, yet no-nonsense sort of expert. The author of “Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals (Second Edition),” she has often been quoted on her philosophy: “Physical therapy is a critical service, not because it will accelerate a child’s rate of development, but because it will improve a child’s long-term functional outcome.”

Winders, who has been with the Sie Center since it opened, recently spoke about her dream job.

Q: What were your plans when you came to the Sie Center?

A: I was excited to work with a comprehensive multi-disciplinary team of professionals dedicated to children who have this condition. The vision of Anna and John J. Sie created the opportunity to have this level of collaboration of clinical care specialists to provide the best care for the children and to do clinical research.

Q: Tell us about the care team.

A: Everyone here is a professional who has chosen to specialize in working with children who have Down syndrome. When we come together to focus on one child from our varying areas of expertise, the difference we’re able to make is enormous. Improving patient outcomes through a team effort is really the future of providing total care for children with disabilities.

Q: How do you approach your specialty, physical therapy?

Pat Winders

A: People who have Down syndrome can expect to live into their 60s, and they will need bodies that allow them to be active for that lifespan. As physical therapists, we help each child develop the body she will need as an adolescent and then as an adult. We focus on building strength, an optimal posture, and refined walking patterns. From birth to age 5, we teach gross motor skills such as rolling, sitting, crawling, walking, running, jumping, riding tricycles, and stair climbing. We want to help them develop that foundation and then use their bodies to do what they choose to do and what they love to do.

Q: What atmosphere have you created at the Sie Center?

A: We want it to be joyful. We don’t force children to practice skills if they are upset or not interested; we offer a different toy or propose a new activity they are motivated to do. We want to set them up to be successful learners. The physical space is beautiful, too. Our large motor room has a rock climbing wall and plenty of space for crawling and walking. Everybody’s eyes widen when they see it. One child stopped in the door and exclaimed, “Awesome!”

Helpful Tips from Patricia C. Winders

From “Down Syndrome Quarterly”

Follow the child’s lead

The child must be motivated to perform a particular skills. Trying to impose your will on a child with Down syndrome is a losing game. I often try to model my style of interaction after the parent’s. It is familiar to the child and most likely to be successful.

Be strategic in providing support

Children with Down syndrome tend to become quickly dependent on support. Provide as little support as possible while still allowing the child to succeed and remove the support as soon as possible.


Contact the Sie Center at 720-777-6750.

Global teams up with Alzheimer’s Association

January 2nd, 2015 by Global Down Syndrome Foundation

Awarding a total of $2.2 mil in Down syndrome-Alzheimer’s research grants. Samuel L. Jackson shares how his family has been affected by the disease

Alzheimer's Initiative

For the second year in a row, Global Down Syndrome Foundation, the Alzheimer’s Association and the Linda Crnic Institute for Down Syndrome are teaming up to to better understand the development of Alzheimer’s disease in individuals with Down syndrome and translate the research into improved treatments for people at risk to develop Alzheimer’s.

The organizations are supporting this growing area of study through a joint grant initiative called “Understanding the Development and Devising Treatments for Alzheimer’s Disease in Individuals with Down Syndrome.”

Why Down syndrome-Alzheimer’s disease research is important

One in eight older Americans suffers from Alzheimer’s disease, and 5.4 million Americans have Alzheimer’s today, with an estimated 13 million by 2050. One hundred percent of people with Down syndrome have the brain pathology of Alzheimer’s disease, and an estimated 50 percent will develop the symptoms before age 50. Recognizing that these conditions are “two sides of the same coin” and studying them together will hasten the development of new treatments for both.

The effects of Alzheimer’s are well-known, but it’s the personal stories that really make an impact. In a magazine article and video with the Hollywood Reporter, film megastar Samuel L. Jackson talks about his family’s “heartbreaking” struggle with Alzheimer’s. Read more at www.hollywoodreporter.com/news/samuel-l-jackson-opens-up-725419 and watch the video below.

2015 Research Grants

Global and the Alzheimer’s Association have already awarded $1.2 million in research grants to scientists around the world studying the connection between Down syndrome and Alzheimer’s disease, and a second round of grants, totaling $1 million, will be announced soon.

Previous Research Grants Awardees and Their Projects

In response to a Request for Application, more than 50 applications from around the world were received and vetted by the extensive peer review system at the Alzheimer’s Association with input from the Crnic Institute. The process resulted in five grants, including:

Three grants for senior investigators, each totaling $300,000:

Two grants for new investigators, each totaling $150,000:

Empowering Self-Advocates in Florida

December 30th, 2014 by Global Down Syndrome Foundation

The Down Syndrome Association of Central Florida (DSACF) was founded by a small group of families sitting around a kitchen table in 1991. Since then, DSACF’s mission of hope, encouragement, and acceptance has grown exponentially.

DSACF

Down Syndrome World
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

Today, the group’s reach spans 11 countries, impacting more than 1,100 individuals who have Down syndrome, along with their loved ones and medical teams.

Growing together
In addition to year-round programming, DSACF hosts an annual Step Up for Down Syndrome walk in downtown Orlando that attracts nearly 10,000 participants.

Amy Van Bergen

The organization also regularly holds expert educational seminars on topics of interest to parents, such as behavior and education. As a global Down Syndrome Educational Grant recipient, it hopes to expand that work.

“The Grant helps us increase educational programming in undeserved rural areas,” said Amy Van Bergen, Executive Director of DSAF. “We’ve also begun a new course to help teach reading and other academic skills to adults with Down syndrome.” Plans are in motion to re-create the adult education track throughout the area and develop a toolkit that will allow smaller organizations to implement similar programs at little to no cost.

To donate, volunteer or learn more about DSACF, visit dsacf.org or call 407-478-5621

The Art of Activism: Raymond Hu

December 6th, 2014 by Global Down Syndrome Foundation

For San Francisco Bay Area artist Raymond Hu, 37, each brushstroke has the potential to inspire people to be better stewards of the planet.

Down Syndrome World
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

Raymond Hu

Hu was once a reluctant artist. He initially declined his father’s suggestion that he study Chinese brush painting, but when he finally relented, he was hooked. Hu began learning the medium from internationally acclaimed artist and art professor Lampo Leong in 1990. The work of Jackson Pollock and Georgia O’Keeffe also influenced the development of his style.

After experimenting with painting flowers and landscapes, Hu began creating strikingly evocative paintings of animals, particularly endangered species. The expressiveness of the creatures’ faces and eyes invites viewers to ponder their own impact on the animals’ habitats and futures.

"Cassowary" by Raymond Hu

"Cassowary" by Raymond Hu

Animals are like our friends – we have to protect them,” Hu said. “Part of the reason I paint animals is because I want people to care about them. There are many ways to be an activist. I want to encourage people to be more ecologically and environmentally mindful.”

Hu believes everyone goes through two phases in life.

“You begin as an explorer,” he said. “As you get older, you become an adventurer and begin taking risks.”

Hu’s latest adventure is portrait painting. His next may be education.

“Art is a good way to develop cognitive skills, and it’s fun,” he said. “I’ve attended several National Down Syndrome Congress Annual Conventions in the past 20 years, and I may have inspired many young adults with disabilities to enter the field of fine arts. One day I hope to become a teacher, so I can teach children about the arts and how to paint.”

Read more about Hu’s artistic methods and see more of his artwork by accessing the Down Syndrome World digital edition, available to members of the Global Down Syndrome Foundation. JOIN TODAY!

Salah Foundation grant provides $200,000 for Global

December 2nd, 2014 by Global Down Syndrome Foundation

A generous matching grant from the Salah Foundation will provide $200,000 to underwrite Global’s important new initiative for adults with Down syndrome.

Salah Foundation

Rob Shama, Fred Churbuck, Chase Turner Perry, Megan Fearnow & Dan Fearnow

Salah Foundation

The $200,000 in total matched funds allows Global to work with world-class researchers to create evidence-based educational programs for adults with Down syndrome in the areas of safety, health, nutrition, and communication & speech. Global intends to share the results of the research with the greater community in the hopes that programming that is proven will be replicated.

The Salah Foundation is a private foundation that supports nonprofit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens.

The Salah Foundation’s capacity building grant of $100,000 was matched by generous supporters at Global’s Be Beautiful Be Yourself Fashion Show, where donors rallied to get the program started.

The Salah Foundation was created and funded through the generosity and lifelong success of James M. “Jim” Salah, a first generation American — son of immigrants who courageously left Lebanon and lived the American dream.

Jim Salah started his own construction business in Boston and grew it into a formidable company handling some of the city’s largest utility projects. He also ventured into real estate development and heavy equipment leasing, all while investing in nonprofit organizations and his community.

The Salah Foundation is headed by Jim Salah’s niece, Noreen Salah Burpee. Global thanks the Salah Foundation, Noreen Salah Burpee, Fred Churbuck and Megan Fearnow for understanding the impact and the capacity-building this grant has on our community, and for believing in a brighter future for our children and adults with Down syndrome.

Global will launch the evidence-based educational programs for adults with Down syndrome in 2015 in collaboration with several universities. Each quarter will touch upon one of four subjects — safety, health, nutrition, and communication & speech. With an anticipated 1:3 ratio and research collected pre-, during and post-, the goal is to provide best practices to post-secondary and life-skills programs around the country.

NIH DS-Connect registry unites Down syndrome community

December 2nd, 2014 by Global Down Syndrome Foundation

DS-Connect promises a path to research breakthroughs. If you are a parent or a guardian, help your loved one with Down syndrome and sign up now.

Sign up for DS-Connect today!

DS-Connect registry

DS-Connect: The Down Syndrome Registry is a vital new resource for people with Down syndrome, giving thousands of individuals access to a community of researchers working to improve their health and well-being.

Launched by the National Institutes of Health (NIH), the registry was first conceived in 2007 as part of the NIH’s 10-year Research Plan on Down Syndrome. Now that it has launched, DS-Connect provides a way for individuals with Down syndrome and their families to learn about, and take part in, research studies focused on related conditions such as developmental delays and congenital heart defects.

Global Down Syndrome Foundation helps lay the groundwork

DS-Connect registryThe registry began to take shape in December 2010, when Global and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the NIH co-hosted the first “Down Syndrome: National Conference on Patient Registries, Research Databases and Biobanks.”

During that meeting, 70 representatives from Global, the Linda Crnic Institute for Down Syndrome, NICHD, NIH, the Centers for Disease Control and Prevention, and other non-governmental organizations met to discuss the issues and implications of creating a such patient database.

“We wanted to create tools that would facilitate research for Down syndrome,” said Melissa Parisi, M.D., Ph.D., Chief of the Intellectual and Developmental Disabilities Branch at the NICHD. “NIH and Global worked together to identify leaders in the Down syndrome community who could help with next steps in the creation of the registry.”

The conference addressed a number of crucial issues related to the creation of an online patient database, including confidentiality concerns and short-, mid- and long-term goals. The launch of the registry is the ultimate successful outcome, and thus far, over 2,000 individuals with Down syndrome have registered.

Elevating Down syndrome research to new heights

Dr. Melissa Parisi

Dr. Melissa Parisi

“This is the first time the Down syndrome community has had a resource that involves active participation in medical research,” Dr. Parisi said. “DS-Connect is designed to connect them with scientists working to better understand the condition and develop treatments that will help improve their quality of life.”

People with Down syndrome are living longer now than ever before, so it has become crucial to understand the health problems within the community and how to best treat those problems.

The secure, confidential database does more than link researchers with potential study subjects, however. Families are able to access lists of specialists, such as healthcare providers with experience treating children with Down syndrome, as well as educational resources that enable them to learn more about various conditions, such as Alzheimer’s.

“This is an opportunity for these families to learn about Down syndrome, not only for their own child, but also for the broader community,” Dr. Parisi said. “But it’s also about the research community giving back.”