Archive for January, 2016

The Salah Foundation has provided a generous matching grant of $187K to support the Global Down Syndrome Foundation’s Health & Wellness: Continuing Education for Adults with Down syndrome research program. Building on the program The Salah Foundation previously helped jumpstart, researchers at the University of Denver and Colorado State University are looking at measuring cognition in addition to garnering a better understanding of best practices in life skills and post-secondary education for people with Down syndrome.

The core of the program is a four-module education program carefully designed for adults with Down syndrome. Each module will be taught by respected experts in their fields and will provide participants with important life skills over a course of ten weeks. The entire four-module research program, including data collection, is designed to take place over an 18-month period. Participants will be evaluated before, during, and after each module to provide researchers with valuable empirical data about what works best to improve the life skills of adults with Down syndrome. Instructors work with the participants to develop individualized goals.

A preliminary research module ran from November to December 2015 with excellent results and concluding in various research adaptations.

The follow-on research module, Dance & Physical Fitness, is structured to help participants select enjoyable physical activities, plan weekly schedules that factor in recreational physical activities, and understand basic fitness and the impact on the body. These skills are especially important for the Down syndrome community due to a tendency towards obesity, and because exercise may also help increase cognitive functioning.

The other educational research modules in the program complement each other and provide a range of life-skills training. One module, Safety & Awareness, will focus on how to safely interact with others when socializing or in public. A third module, Communication Skills and Pragmatics, will focus on enhancing social interaction skills, especially peer socialization. The fourth module, Nutrition & Healthy Choices, will provide participants will knowledge about nutrition, meal planning, and how to cook and serve a meal in a social situation with friends or family.

Adults with Down syndrome ages 21 and up are being recruited to participate in the follow-on research program, which will begin on Monday, February 8, 2016 at the University of Denver. Dr. Karen Riley, Dean for the Morgridge College of Education at the University of Denver, is spearheading the research component of the program along with Dr. Deborah Fiddler, Professor of Human Development and Family Studies at Colorado State University.

The Salah Foundation is a private foundation by invitation only, that supports non-profits organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is special interest in education, medical research, community development and self-sufficiency programs. In addition to funding the new Continuing Education program. The Salah Foundation has helped fund Global’s Be Beautiful Be Yourself Hollywood Ball, as well as the I ♥ YOU Dance Parties, which provide members of the Down syndrome community with an avenue to socialize, get exercise, and become more comfortable with self-advocacy. For more information, go to http://www.globaldownsyndrome.org/programs-conferences-grants/programs/i-love-you-dance-parties-for-adults-with-down-syndrome/

Researchers from the UK, China, and the US include Drs. Jeanne Lawrence, Tom Blumenthal, Huntington Potter, Angelika Amon, Michael Yeager and more.

“Biology of Down Syndrome: Impacts Across the Biomedical Spectrum,” the first national Keystone Symposia conference focused on Down syndrome research, will be held this January 24-27 in Santa Fe, New Mexico. The conference will examine every aspect of current Down syndrome research, as well as help promote the translation of research to therapeutic solutions. Over 130 scientists working on Down syndrome research from around the world will be presenting or attending the conference.

In a rare occurrence at a Keystone Symposia, a non-scientist will provide a keynote speech during the opening session. Down syndrome self-advocate, public speaker, and restaurateur Tim Harris will provide the conference’s opening remarks. Tim is the owner of Tim’s Place, one of the first restaurants owned by a person with Down syndrome. Tim’s Place is famous for serving hugs with their food, and Tim has given out more than 60,000 hugs to everyone from Stevie Wonder to the President of the United States.

Researchers associated with the Linda Crnic Institute for Down Syndrome have prominent leadership roles at the conference. Dr. Tom Blumenthal, Executive Director, Linda Crnic Institute for Down Syndrome and Professor, Molecular, Cellular and Developmental Biology, University of Colorado is co-organizing the conference along with Dr. Jeanne Lawrence, Professor and Interim Chair of the Department of Cell and Developmental Biology at the University of Massachusetts Medical School and a Crnic Scientific Advisory Board member. Drs. Victor Tybulewicz of the Francis Crick Institute and Elizabeth Fisher of the University College London Institute of Neurology are also co-organizing the event.

Dr. Blumenthal will be presenting his research Protein Level Changes in the Blood Reveal Altered Cell Signaling Pathways in Down Syndrome. Dr. Lawrence will Chair the Dysregulation of Cellular Pathways in Down Syndrome session.

Dr. Huntington Potter, Professor of Neurology and Director of Alzheimer’s Disease Research in the Department of Neurology and the Linda Crnic Center for Down Syndrome at the University of Colorado, Denver will be presenting his research Trisomy 21 and Other Aneuploidy in Multiple Neurodegenerative Diseases. Dr. Angelika Amon, another Crnic Scientific Advisory Board member, will be presenting her research Effects of Aneuploidy on Hematopoiesis and Blood Malignancies. Dr. Michael Yeager, Assistant Professor, Pediatric Critical Care, University of Colorado School of Medicine and Crnic Grand Challenge Grant recipient in 2015 and 2013, will be presenting his research Phenotypic and Functional Disturbances in White Blood Cell Subsets in Down Syndrome.

The Global Down Syndrome Foundation raises funds for the Linda Crnic Institute for Down Syndrome to underwrite critical research benefiting people with Down syndrome. $5.7 million in research grants have been awarded to 33 investigators to date, with $3.5 million going to Crnic Grand Challenge Grant recipients. Dr. Tom Blumenthal established the Crnic Grand Challenge Grants program in 2013; the grants are available to scientists from the University of Colorado system. This support is critical to advance Down syndrome research, since Down syndrome is the least funded genetic condition by the National Institutes of Health (NIH). The research sponsored by the Crnic Institute also has the potential to not only benefit people with Down syndrome, but also the millions of typical people who suffer from a wide variety of ailments like cancer, Alzheimer’s disease, and autoimmune disorders.

For nearly 44 years, the Keystone Symposia has helped advance biomedical and life sciences by creating interdisciplinary connections between scientists at conferences that facilitate the generation and exchange of ideas.

Megan Bomgaars is a Global representative, filmmaker, entrepreneur, and star of A&E^®‘s acclaimed new series Born This Way. She took a break from her very busy schedule to meet up with Global and Denver Nugget’s star Kenneth Faried to spend the afternoon shooting photos for the upcoming front cover of Global’s award winning magazine Down Syndrome World™.

To say that Megan has been busy is something of an understatement.
She’s been a model, working the runway at not one but two of the Global Down Syndrome Foundation’s Be Beautiful Be Yourself Fashion Shows, the largest fundraisers in the country for Down syndrome. She filmed the empowering and hugely popular “Don’t Limit Me” video that has received widespread praise. She gave a keynote speech at last year’s National Down Syndrome Congress Convention. She’s an artist and businesswoman, selling hand-dyed, one-of-a-kind scarves and tote bags from her website, megology.com. She also represents Global as a tireless self-advocate for people with Down syndrome, prompting an invitation to the White House this past summer to First Lady Michelle Obama’s 2015 Beating the Odds Summit. But Megan insists that she’s a “very typical 22-year-old girl.”

Megan’s dream is to be a filmmaker and a producer.
Megan also dreams of being independent, living on her own, getting married, and having a baby. Although Megan and her mother Kris are nearly inseparable (Megan calls her mother her “Dream Maker”), Megan’s dream of becoming a parent symbolizes the type of issues that families of people with Down syndrome live with every day.

In the meantime, it looks like Megan will be keeping busy – A&E^® just renewed Born This Way for a second season!

Check out Megan Bomgaars in the winter 2016 issue of Down Syndrome World™, available to Global Down Syndrome Foundation members. To become a member, go to downsyndromeworld.org.

Recipient of Global’s Award of Excellence in Behavioral Health & Nutrition and author of the Down Syndrome Nutrition Handbook, Joan Guthrie Medlen shares her three important tips for healthy living and well-being.

“Advice for People with Down Syndrome on Eating Well and Living Well”

The November 2015 Global Down Syndrome Foundation Educational Series focused on Nutrition and Lifestyles for Children, Teens, and Adults with Down Syndrome.

160 parents and professionals attended the two-day conference with overwhelmingly positive feedback:

“Always excellent presentations, content, facilities, food, etc. Thank you!” – Jerry Shelsta

“Thank you for all you provide for our community!” – Jenni Rysavy

“Always enjoy the great learning opportunities you provide. Thank you!” – Barbara Ritchie

“Presenter was well informed and well spoken. Loved the sensory section!” – Melissa Armour

“Lots of Q&A time!”– Ashley McCasuker

Joan Guthrie Medlen, Med, RDN, LD, is a registered dietitian who became involved with Down syndrome issues when her son Andy was born with Down syndrome 26 years ago. She has published two popular books promoting healthy lifestyles for people who are differently-abled, The Down Syndrome Nutrition Handbook, and Cooking by Color: Recipes for Independence. She is also the winner of numerous awards, including the Global Down Syndrome Foundation’s Award of Excellence in Behavioral Health & Nutrition. To access her Global Down Syndrome Educational Series presentation please click here.

Celebrating 6 years of providing dance and confidence to children with Down syndrome

The Be Beautiful Be Yourself (BBBY) dance program was launched in 2010 with only 10 students and is a partnership between Colorado Ballet, the Global Down Syndrome Foundation, and the Sie Center for Down Syndrome at Children’s Hospital Colorado. In six years the program has served over 100 children with Down syndrome and their families.

The BBBY classes are made possible by a generous grant from The Melvin & Elaine Wolf Foundation and culminate with two students being chosen to perform in the official production of the Nutcracker at the Colorado Ballet.

“You know you’ve succeeded as an instructor and as a catalyst for change when one of our students gets up in front of over 2,000 people at the Ellie Caulkins Opera House in the Nutcracker,” said Gil Boggs, Artistic Director at Colorado Ballet. “You can almost feel the audience grasping that there’s a kiddo with Down syndrome on the stage nailing their role and inspiring a whole new paradigm. I am proud to put these dancers in the Nutcracker production!”

World renowned physical therapist, author of Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals, and Director of Therapies at the Sie Center, Patricia C. Winders, initiated the program.

The BBBY dance classes are offered weekly, throughout the year for 25 children with Down syndrome ages 5-14 at three levels of experience. Three Colorado Ballet instructors work closely with Winders to build kinesthetic and cognitive skills through locomotor movements that incorporate shapes, rhythm and basic dance steps. Each class culminates with a showcase for approximately 175 family members and friends where students demonstrate their skills and self-confidence.

“Piper loved this class,” said parent Aimee Guildner. “In our world of school and homework and therapy, it made my heart happy to take her somewhere she was really, genuinely, excited about going. She could be herself. She could be successful. She was happy. I think that, all too often, our kids are faced with trying to be ‘good enough.’ I commend these classes for not making them feel ‘good enough’ and instead making them feel great!”

By Samantha Hyde, Colorado Ballet Director of Education

View photos of the Be Beautiful Be Yourself Fall Dance Program!

Global receives $187K Salah Grant, “Born This Way” Star to be featured in DS World, Nutrition Tips, and More