Archive for the ‘Blog’ Category

 

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The Global Down Syndrome Foundation, the Alzheimer’s Association, and the Linda Crnic Institute for Down Syndrome have awarded $1.2 million in research grants to five scientists for innovative investigations that explore the development of Alzheimer’s disease in individuals with Down syndrome. The goal is to eventually translate the findings into improved treatments for all people with Alzheimer’s.

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

“The Alzheimer’s Association is very interested in understanding why people with Down syndrome are at such high risk for Alzheimer’s, and how it relates to other variations of the disease, so that we can identify new therapies to treat Alzheimer’s in both the Down syndrome and typical populations,” said Maria Carrillo, Ph.D., Alzheimer’s Association vice president of Medical and Scientific Relations. “Research in this population may also help us develop predictive tools for Alzheimer’s and design more effective clinical trials.”

“Investing with the Alzheimer’s Association has been so rewarding. The science our joint initiative is funding is of the highest caliber, and each grant approaches understanding, treating or preventing Alzheimer’s in people with Down syndrome from a very different angle. If initial results are promising, we hope that the National Institutes of Health will continue to fund this excellent science,” said Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation.

Read more about the grant announcement, and learn about the researchers and their projects.

Kyra Phillips, who received our Quincy Jones Exceptional Advocacy Award last weekend at the Be Beautiful Be Yourself Fashion Show, showed again why she is so deserving of recognition when she stepped up to tell the story of Texas high school cheerleader Brittany Davila last week.

Davila has been a cheerleader on her school squad since junior high but was told she could no longer cheer on the sidelines during games at Deer Park High School because, her mother said, “it was a different coach, and now she can’t do it because it’s a liability.”

Check out the piece that Kyra did on her HLN show, “Raising America with Kyra Phillips,” (the video and full story are available on the HLN website), and let us know: What do you think about schools that tell our kids they can’t be full participants in school sports?

Thanks, Kyra, for always being out there in support of people with Down syndrome!

Read Kyra’s poem, “If You Only Knew Me,” at The Huffington Post.

Over $1.6 million was raised at the Global Down Syndrome Foundation’s annual Be Beautiful Be Yourself Fashion Show on Saturday, Sept. 28, at the Sheraton Downtown Denver Hotel benefiting the Linda Crnic Institute for Down Syndrome, including the Sie Center for Down Syndrome. The gala was sold out, with 1,100 people in attendance.

This year, the annual event honored HLN anchor Kyra Phillips and entrepreneur and restaurant owner Tim Harris with the 2013 Quincy Jones Exceptional Advocacy Awards. Award-winning actor John C. McGinley, the organization’s International Spokesman, presented the award to Phillips, while Jamie Foxx’s sister and inaugural recipient DeOndra Dixon presented the award to Harris.

To celebrate the fifth anniversary of the Be Beautiful Be Yourself Fashion Show, this year’s event featured the foundation’s past five ambassadors: 7-year-old Samantha Marcia Stevens of Massachusetts, 29-year-old Dixon of California, 4-year-old Katherine Vollbracht Winfield of Washington state, 7-year-old Chase Turner Perry of Colorado, and 10-year-old Sophia Kay Whitten of Colorado. They were escorted down the fashion show runway by their family and friends and major supporters of the Global Down Syndrome Foundation.

Celebrity escorts included McGinley, Phillips, supermodel Beverly Johnson, NFL Hall-of-Famer Eric Dickerson, Fox News anchor John Roberts, singer-songwriter Todd Park Mohr, Denver Nuggets players Kenneth Faried and Ty Lawson, Miss Colorado Meg Kardos and Denver Broncos cheerleaders.

Read the full press release.

Dr. James DeGregori

In recognition of September as Blood Cancer Awareness Month, the Global Down Syndrome Foundation held a Q&A with Dr. James DeGregori, who has received one of the inaugural Crnic Institute Grand Challenge Grants. DeGregori received the award for his research into leukemia and Down syndrome, specifically the increase in leukemia incidence and other problems with blood cell production, including reduced immunity, in people with Down syndrome.

1. What is the co-incidence of leukemia and Down syndrome?

While individuals with Down syndrome are at a decreased risk for the development of most solid cancers (~2 fold), they are at a 10-50 fold increased risk of developing leukemia (most commonly B-cell acute lymphoblastic leukemias), with a striking ~500 fold increased risk for acute megakaryoblastic leukemia (AMKL; normally very rare).

2. Please describe the nature of your research.

Down syndrome is associated with a striking increase in leukemia incidence, as well as a variety of other problems associated with blood cell production, including reduced immunity. Using mouse models, we will determine whether deficiencies in blood cell production originate in the reduced function of blood stem cells. Furthermore, we will ask whether the increase in leukemias associated with Down syndrome is actually caused by the stem cell defects: Does the poor health of these stem cells enhance the evolution of leukemias? These studies could indicate mechanisms to improve blood cell function and prevent leukemias in people with Down syndrome.

3. How could your research end up benefiting people with Down syndrome?

If we can better understand how trisomy for chromosome 21 (individuals with Down syndrome have 3 chromosome 21s per cell instead of 2), then we can hopefully develop methods/treatments that can alleviate some of the negative consequences of this trisomy. One of our ideas is that trisomy is inducing a “stress response” in cells, resulting in their reduced function (such as in blood cell production) and also leading to selection for leukemia-causing mutations that overcome this stress response. If we could tone down this stress response, we might be able to lessen both impaired blood cell production and increased leukemia incidence.

4. How important is the Crnic Supergroup in helping your research and promoting collaboration?

Very important. We are already collaborating with Dr. Katheleen Gardiner’s group for the mouse model, and we will share critical gene expression data with other Supergroup members who are also looking at how trisomy impacts cellular programs. Most importantly, when you get a bunch of smart people together with varied expertise, new ideas and new approaches will be generated.

5. How important is the Crnic Institute funding for advancing research on the CU campus?

Absolutely critical. My lab had no involvement in Down syndrome research before last year, so the funding allowed us to enter into this field. And as I mentioned above, the Crnic Institute’s role is more than in just providing necessary funds: They have attracted a lot of bright and innovative scientists in Colorado to better understand and treat a common problem: the negative consequences of trisomy 21.

6. Please tell us a little about yourself?

I have been doing cancer research for almost 30 years. I started doing research at the University of Texas at Austin as an undergraduate (with Dr. Hank Bose), did my thesis research with Dr. Earl Ruley at MIT, and then did postdoctoral training at Duke University with Dr. Joseph Nevins. I have been a faculty member in the CU School of Medicine since 1997. My lab seeks to understand both the evolutionary origins and the vulnerabilities of cancer cells, and most of our studies have focused on leukemias. Our research has been heavily funded by the National Cancer Institute and by the Leukemia and Lymphoma Society.

7. Is there anything else you’d like to add?

My cousin had Down syndrome and succumbed to leukemia when she was about 20. She has always served as an inspiration for our leukemia research, and I have wanted to pursue the connection between Down syndrome and leukemias for many years. The Crnic Institute has provided my lab with this opportunity.

Fifty years ago today, the Rev. Martin Luther King Jr. climbed the steps of the Lincoln Memorial in Washington, DC, and spoke words that will forever be remembered and forever changed the civil and human rights movement. King’s dream to let freedom ring for all people, for all races, for all humanity, inspires us still and reminds us of how far we’ve come and how far we’ve yet to go.

King spoke of discrimination and the scourge it is on society, but he also spoke of hope, of a brighter future, of a nation that “will rise up and live out the true meaning of its creed: ‘We hold these truths to be self-evident, that all men are created equal.’”

So today, on this anniversary, indulge us to recount two recent tragedies bearing undercurrents of discrimination. One caused a firestorm of media coverage and stirred emotions across the nation. The other went largely unnoticed by the country at large, but has recently garnered some national attention. Both serve as important examples that more must be done to achieve true equality and justice.

By the end of February 26, 2012, Trayvon Martin lay dead in Sanford, Florida. The 17-year-old African-American was fatally shot by George Zimmerman, a member of the neighborhood watch. One year later, Zimmerman was acquitted of criminal charges in accordance with Florida’s “Stand Your Ground” law, which allows for the use of lethal force when an individual fears for his or her life.

On January 12, 2013, Ethan Saylor died at a movie theater in Frederick, Maryland. The 26-year-old who happens to have Down syndrome was taken to the ground by three off-duty deputies and handcuffed for failing to pay for a $12 ticket to rewatch “Zero Dark Thirty” and for resisting removal from the theater. His larynx was crushed and the coroner ruled it a homicide. Despite the homicide ruling, the grand jury concluded no excessive force was used, no charges of any nature have been filed, and the Governor of Maryland has refused to launch an independent investigation.

Both of these incidents are disturbing, tragic and worthy of a reassessment of the status quo.

Regardless of where one feels blame is due in the “Stand Your Ground” case, Martin’s death has led to national calls for a review of the laws. Should they be stricken? Or altered? Does anyone really feel that an unarmed teenager is now justifiably deceased?

Ethan Saylor’s death deserves an equally important national dialogue. There are now national calls for better training for law enforcement officers on how to deal with the differently-abled. But the question remains, “If Ethan were ‘typical,’ would there be criminal charges filed or at least an independent investigation into his death?”

In the spirit of Martin Luther King Jr., we can ask ourselves, What can we do to prevent these types of tragic deaths in the future? How can we ensure the death of these two young men were not in vain?

For Ethan, we can all join together and at least demand an independent investigation into his death. Something Governor O’Malley of Maryland has yet to do. With a proper investigation, we can know better what went wrong, if charges should be filed, or if training law enforcement officers on how to handle the differently-abled will prevent another tragic death like Ethan’s.

We at Global don’t know what the future holds, but on this day of all days, we have a dream – justice for Ethan.

Act now for Justice for Ethan. Sign a petition calling for Governor O’Malley to launch an independent investigation. (Sign the petition by following the link and filling out the form on the upper right of the page.)

Read more about the Ethan Saylor case

Grammy Award-winner Colbie Caillat to perform at private concert

WHO: Global Down Syndrome Foundation has organized nationally and internationally renowned Down syndrome experts to present at the Global Down Syndrome Foundation Research & Medical Care Roundtable, including:

• Dr. Thomas Blumenthal, Executive Director, Linda Crnic Institute for Down Syndrome
• Dr. Huntington Potter, Director of Alzheimer’s Research, Linda Crnic Institute for Down Syndrome
• Dr. Katheleen Gardiner, Professor, Department of Pediatrics, Linda Crnic Institute for Down Syndrome, University of Colorado Denver

• Dr. Roger Reeves, Professor, Department of Physiology, Johns Hopkins University School of Medicine
• Dr. William Mobley, Executive Director, Down Syndrome Center for Research and Treatment, UC San Diego
• Dr. Fran Hickey, Medical Director, Anna and John J. Sie Center for Down Syndrome, Children’s Hospital Colorado
• Dr. John Crispino, Associate Director of Education, Robert H Lurie Comprehensive Cancer Center
• Dr. Yvonne Maddox, Deputy Director, National Institute of Child Health and Human Development
• Dr. George Capone, Director, Down Syndrome Clinic and Research Center, Kennedy Krieger Institute;
• Dr. Peter D. Bulova, Director, University of Pittsburgh Adult Down Syndrome Center
• Dr. Peggy Kelley, Pediatric Otolaryngology, Attending Physician, Children’s Hospital Colorado
• Dr. Dennis McGuire, Director of Psychosocial Services, Adult Down Syndrome Center of Lutheran General Hospital
• Dr. Dean Hartley, Director of Science Initiatives, Medical and Scientific Relations, Alzheimer’s Association
• Dr. Ira Lott, Pediatric Neurologist, UC Irvine and CHOC Children’s
• Dr. Jorge Busciglio, Professor, Department of Neurobiology & Behavior, UC-Irvine

After the Global Roundtable, Grammy Award-winning singer/songwriter Colbie Caillat will perform at a free, private concert for attendees to the Global Roundtable. Caillat and her homespun music continue to resonate with listeners and win new fans. Since the release of her nearly double platinum debut album “CoCo,” Caillat has been a music sensation with such hits as “Bubbly,” “Realize,” “Lucky” and “Brighter Than the Sun.” USA Today has called the California girl a vital part of “a new wave of troubadours luring fans of all ages into a peaceful, easy feeling.”

WHAT: The Global Down Syndrome Foundation Research & Medical Care Roundtable is co-organized with the National Down Syndrome Congress and supported by the Down Syndrome Medical Interest Group. This roundtable will feature top scientists and medical professionals working to better the lives of people with Down syndrome. Topics will include sleep apnea, immune deficiency, heart, leukemia, cognition, and Alzheimer’s disease.

WHEN/WHERE: The Global Roundtable will take place at Children’s Hospital Colorado, 13123 E. 16th Ave., Aurora, CO 80045, from 9 a.m. to 4 p.m. on Thursday, July 18, 2013.

The private Colbie Caillat concert offered to attendees of the Global Roundtable will start promptly at 7:30 p.m. at the Paramount Theatre, 1621 Glenarm Place, Denver, CO 80202.

Exciting news! The 2013 National Down Syndrome Congress Annual Convention is going to be held in Denver from July 19-21st and Global Down Syndrome Foundation is the Chair of the host committee!

The convention boasts close to NINETY Down syndrome experts from around the world speaking at multiple workshops. The full schedule of workshops and speakers is now available and there is something for everyone.

If you have a family member with Down syndrome or you are a professional serving people with Down syndrome this convention is a must-attend. To ensure access to this wonderful convention that provides a roadmap for children and adults with Down syndrome to reach their potential, the Global Down Syndrome Foundation is offering $50 scholarships off registration. The scholarships will be offered on a first come first serve basis through our Christian Ransom Ball Scholarship Fund.

Please take a moment to register or pass this on to someone who would benefit from this life-changing experience. The discount code LSTMN3D will automatically process your $50 scholarship at registration checkout.

Thanks to our AMAZING 2013 National Down Syndrome Congress Annual Convention Colorado Host Committee members who are contributing to the success of this convention – Adam’s Camp, ARC Thrift Stores, Colorado Springs Down Syndrome Association, Denver Adult Down Syndrome Clinic, Down Syndrome-Autism Connection, The Rise School of Denver, and the Rocky Mountain Down Syndrome Association.

The Washington Informer described the Global Down Syndrome Foundation’s Be Beautiful Be Yourself DC Gala as “A HUGE SUCCESS,” and here’s why we agree:

The atmosphere at Global’s Annual DC Gala in the Ritz-Carlton Washington DC was electric as our 25 beautiful models with Down syndrome walked the runway with a host of congressional reps and celebrities. Sheryl Crow got the crowd singing and our models dancing on the stage right next to her! You can check out the photos from the event on our website or purchase photos from our account site. At the end of the night, we raised LOTS of awareness and more than $400,000 to help accomplish Global’s mission to improve the lives of people with Down syndrome.

Here is a more detailed recap:

Our Families

There could be no success without our wonderful self-advocates and families. The outpouring of love, gratitude and the desire to help by wanting to do more was so palpable that our staff is doubly committed to research and medical care advocacy work in DC. Our 2013 Ambassador, Cole Rodgers, did a spectacular job as both a model and a role model, and his family was a delight to work with and key to the evening’s success. Thank you Cole!

Congressional Rep Support

We had over 20 congressional representatives attend, and 10 of them escorted our models down the runway. After the event, several representatives whom we did not know personally came up to us and let us know that “disability issues” are their top priorities and they want to meet about funding for Down syndrome. Our honorees Congresswoman McMorris Rodgers, Congressman Van Hollen and last year’s honoree Congressman Sessions were SUPERSTARS.

Celebrities

Beautiful celebrities (inside and out) attended, including HLN and Fox News Anchors Kyra Phillips and John Roberts, supermodel Beverly Johnson, Alex Sessions, and DeOndra Dixon. We were also fortunate to enjoy a performance by Sheryl Crow, who was amazing with our models and so gracious with her photos! Of course we had our own celebs from the Linda Crnic Institute for Down Syndrome, Tom Blumenthal and Hunt Potter. Former Secretary of State Madeleine Albright was kind enough to attend – Ambassador Chris Hill and his wife Julie, and Madeleine’s siblings are fans of ours and have attended all of our DC events so far, so we feel very fortunate.

NIH Support

Several key representatives from the National Institutes of Health attended. They were very supportive of the event, and the following day Global and the Crnic Institute had a meeting with NICHD to discuss several potential scientific collaborations. Thank you NIH!

Sponsors

A huge thanks to our sponsors of this important event. We are new to DC and thankful that so many companies and organizations have embraced us as their own. Thank you, thank you! Please take time to see a full list of our generous sponsors.

Press

The press was fabulous, and the coverage was extensive. Every reporter and editor who attended was blown away by our event and the fact that pretty much everyone stayed for the entire event AND were actually quiet and attentive for the fashion show! Our self-advocates really do shine for themselves! Below is just a fraction of the press. You can click on the links to access the coverage:

• Washington Post – Global Down Syndrome Foundation Hosts “Be Beautiful Be Yourself Gala”
• Huffington Post – Global Down Syndrome Foundation’s Be Beautiful Be Yourself Gala
• Roll Call – Members, Sheryl Crow Party at Down Syndrome Foundation Gala
• The Hill – McMorris Rodgers walks the catwalk, but her son steals the show
• WUSA (TV)  – Global Down Syndrome Foundation: Be Beautiful Be Yourself
• Politico (online video) – Supermodel spotlights Down syndrome
• Washington Examiner – Sheryl Crow, lawmakers hit the stage for fashion show benefit
• Huffington Post – Models Change Perceptions
• Temple Patch (FL) – U.S. Congressman to Escort Temple Terrace Resident to Down Syndrome Gala
• HLN/CNN – Fashion show puts spotlight on amazing children

Thank you to everyone whose continued and important support of our mission made this and all of events possible, and we hope to see you Saturday, September 28th at our Be Beautiful Be Yourself Fashion Show in Denver! 

The Global Down Syndrome Foundation is proud to announce that nine-time Grammy-winner Sheryl Crow will perform at the 2013 Be Beautiful Be Yourself Gala. The high-style fashion show and fundraiser taking place at the Ritz Carlton Washington D.C. on May 8. The event will also feature celebrities including CNN’s Kyra Phillips and Fox News’ John Roberts, and members of Congress. The gala is designed to raise awareness about Down syndrome and will honor U.S. Rep. Cathy McMorris Rodgers and U.S. Rep. Chris Van Hollen with the Quincy Jones Exceptional Advocacy Award for their support of those with disabilities.

Since the release of her seven-times Platinum, Grammy award-winning debut, “Tuesday Night Music Club,” Sheryl Crow has garnered nine Grammys, performed duets with musical luminaries such as Sting and Mick Jagger, released seven studio albums (each charting Top 10, four of them platinum-plus), a quadruple-platinum greatest hits collection and a Christmas album.

Crow has also been nominated for an additional 27 Grammys, her most recent for 2008’s critically acclaimed “Detours.”

Crow launched her very own clothing line, Bootheel Trading Co., is a cancer survivor, has performed for President Obama and is a passionate supporter of a variety of environmental and health-related charities, including the NRDC, The Breast Cancer Research Foundation and The World Food Program.

Crow has sold more than 35 million records worldwide. Her new single, “Easy” is off her forthcoming Warner Music Nashville release out later this year.

We are proud to welcome Sheryl Crow to the 2013 Be Beautiful Be Yourself Gala!