May 1st, 2013 by Global Down Syndrome Foundation
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!
April 16th, 2013 by Global Down Syndrome Foundation
At the Global Down Syndrome Foundation, we believe the discrimination against people with Down syndrome in this country is rooted in the historical lack of human and civil rights for people who are differently-abled. We support and applaud the National Down Syndrome Congress and the National Down Syndrome Society working with Robert Ethan Saylor’s family and the Department of Justice to ensure Ethan’s death is not forgotten and to ensure similar unnecessary deaths are prevented in the future. Below is a joint statement with several other Down syndrome organizations addressing this tragedy.
But there is still a burning question.
Every day in every country, there are violations of human and civil rights. In this country, we have a body of law to protect people from such violations and we have organizations such as the American Civil Liberties Union (ACLU), Anti-Defamation League (ADL), NAACP, Amnesty International and ARC.
But people do fall through the cracks, and to date we don’t have a human rights watchdog specifically for people with Down syndrome. The question is – should we? Should we have a nonprofit with a roster of lawyers who go after violations in this country and perhaps others?
Joint Statement Regarding the Robert Ethan Saylor Case
Global Down Syndrome Foundation (Global), International Down Syndrome Coalition (IDSC), International Mosaic Down Syndrome Association (IMDSA), National Down Syndrome Congress (NDSC) and National Down Syndrome Society (NDSS) continue to share deep sadness over the tragic and preventable death of Robert Ethan Saylor.
Each organization is addressing this situation in a manner keeping with their particular mission and all the organizations have been in close communication regarding various initiatives. We are all united in condemning this tragic death and are committed to working together to uphold the human and civil rights of people with Down syndrome and their families.
NDSC and NDSS have taken the lead in this case and have met with the local Frederick County affiliate, members of the Saylor family, and the U.S. Department of Justice. Those interactions are ongoing and seek to support the Saylor family, while preserving all options available to them, and, at the same time, to prevent tragedies like Ethan’s death from occurring in the future. Later this month, following another round of meetings with the Department of Justice and the family, NDSS and NDSC will present a joint “town hall” teleconference to share more information regarding initiatives and proposals to prevent this from occurring in the future.
We hear you. We are listening. And we intend to work as hard as we can, together, to prevent this from ever happening again. We need to stay united as one Down syndrome community that is focused on the bigger picture and justice for Ethan.
See what we are doing and how you can help.
National Down Syndrome Congress – www.ndsccenter.org
Down Syndrome Affiliates in Action, working in its role as a trade association, continues to support and respect the efforts of the other national organizations as all work diligently to address this issue.
April 10th, 2013 by Global Down Syndrome Foundation
The Linda Crnic Institute for Down Syndrome will co-host the “Workshop on Cognition in Down Syndrome – Molecular, Cellular and Behavioral Features and the Promise of Pharmacotherapies” April 13-15 in Washington, D.C. The workshop will bring top scientists together to share discoveries and explore collaborations with the aim to improve the lives of people with Down syndrome.
Katheleen Gardiner, Ph.D., a professor at the Crnic Institute and the University of Colorado School of Medicine’s Department of Pediatrics, is the workshop’s organizer. This is the third international workshop she has organized on Down syndrome and the biology of chromosome 21.
Gardiner received a grant from the Jérôme Lejeune Foundation to organize the workshop and the past two workshops she organized in 2004 and 2007. More than 130 experts from a variety of scientific disciplines are expected to attend the workshop.
“Our invited speakers are not Down syndrome researchers but may be interested in a specific gene on chromosome 21 or in some other type or specific feature of intellectual disability,” Gardiner said. “They may be persuaded to think about doing Down syndrome research and/or provide new ideas, research tools or perspectives to current Down syndrome researchers.”
April 4th, 2013 by Global Down Syndrome Foundation
Toys R Us is once again taking talent submissions for models for its 2013 Toy Guide for Differently-Abled Kids. The company is looking for children ages 12 months to 10 years with diverse disabilities. The photo shoot will occur in New York or Los Angeles, but the location hasn’t been decided yet. In the past, there has been photo shoots in both locations.
Toys R Us is only using “local hires,” meaning travel expenses will not be provided for anyone. If you live outside driving distance and still want to submit an application for your child, be sure to mention on the casting form that you would like to be a considered a “local hire” and would pay your own travel expenses.
All submissions are to be mailed to Toys R Us by Friday, April 19, 2013.
The 2012 guide can be viewed at toysrus.com/differentlyabled.
Here is the casting form, which must be submitted along with two photos:
March 22nd, 2013 by Global Down Syndrome Foundation
Colorado Governor John Hickenlooper joined the Global Down Syndrome Foundation, Anna and John J. Sie, self-advocates and many other organizations providing services to people with Down syndrome on the West Steps of the Colorado State Capitol to celebrate World Down Syndrome Day on Thursday, March 21, 2013.
Among the organizations represented at the Capitol were the Rocky Mountain Down Syndrome Association, Down Syndrome-Autism Connection, and the Denver Adult Down Syndrome Clinic.
The photo helped mark a momentous occasion whereby Governor Hickenlooper officially proclaimed March as Down Syndrome Awareness Month, and March 21st (3/21) as World Down Syndrome Day in Colorado.
Thank you to everyone who came out to show the community our unity in support of research, medical care, education and advocacy that improves the lives of people with Down syndrome!
The World Down Syndrome Day proclamation reads:
WHEREAS, there are an estimated 6 million people with Down syndrome in the world today; and
WHEREAS, people with Down syndrome deserve fundamental human and civil rights and yet in many countries, people with Down syndrome are still not afforded those rights; and
WHEREAS, despite dramatic increases in lifespan and intellectual ability in the U.S., there is still much work to be done regarding the rights to equality, inclusion, education, medical care, research, and support for people with Down syndrome in the U.S. and abroad; and
WHEREAS, starting with Singapore in 2006, the date 3-21 has come to represent 3 copies of chromosome 21 (hence 3-21) and has developed into a movement to celebrate and value people with Down syndrome around the world; and
WHEREAS, the Linda Crnic Institute for Down Syndrome with the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, on the Anschutz Medical Campus in Aurora, Colorado, engages in global research collaborations and the dissemination of medical best practices to all countries specifically to benefit people with Down syndrome; and
WHEREAS, through public awareness, the State of Colorado celebrates the hard work and progress made by parents, self-advocates, medical professionals, researchers, educators, and many non-profit organizations all over the world including but certainly not limited to the Global Down Syndrome Foundation headquartered in Denver, Colorado; and
WHEREAS, the State of Colorado joins the United Nations and over 191 other countries in celebrating and valuing the lives and equality of people with Down syndrome;
Therefore, I, John W. Hickenlooper, Governor of the State of Colorado, do hereby proclaim March 21, 2013, as
WORLD DOWN SYNDROME DAY
In the State of Colorado
The Down Syndrome Awareness Month resolution reads:
WHEREAS, in our recent history, the majority of people with Down syndrome were stigmatized and institutionalized, and that history should never be forgotten or repeated, and people with Down syndrome deserve fundamental human and civil rights; and
WHEREAS, the intellectual ability has dramatically increased, and the lifespan has more than doubled for people with Down syndrome since deinstitutionalization; and
WHEREAS, today through the efforts of human and civil rights activists, people with Down syndrome have the right to live at home, attend their local public schools, get appropriate health care, get married, maintain a job, and lead meaningful, integrated lives; and
WHEREAS, Down syndrome is the most frequently occurring chromosomal disorder and is the leading cause of intellectual and developmental delay in the U.S. and in the world; and
WHEREAS, much progress has been made for the people with Down syndrome through the vision and hard work of parents, self advocates, medical professionals, researchers, educators, and non-profit organizations; and
WHEREAS, through public awareness, the State of Colorado supports the initiatives of organizations working to ensure people with Down syndrome have adequate services, are valued by society, and can lead fulfilling and productive lives in our community;
Therefore, I, John W. Hickenlooper, Governor of the State of Colorado, do hereby proclaim March 2013, as
DOWN SYNDROME AWARENESS MONTH
in the State of Colorado.
March 21st, 2013 by Global Down Syndrome Foundation
Call to Action – Research is important for people with Down syndrome, especially because Down syndrome is the least-funded genetic condition by the National Institutes of Health (NIH). The funding for Down syndrome research at the NIH started a continual and precipitous decline in the year 2001. With recent budget discussions and the possibility that NIH’s budget may decrease, there has never been a more important time to support the NIH and advocate for research funding for Down syndrome.
Contact your U.S. Senators TODAY to support increased funding for NIH. Tell your U.S. Senators to support the “Moran Amendment” to the Fiscal Year 2014 Budget Resolution, which would increase funding for medical research. As the U.S. Senate considers the Fiscal Year 2014 Budget Resolution, Sen. Moran will offer an amendment to increase NIH funding by $1.4 billion to allow NIH to keep up with the rate of biomedical research inflation. Medical research is important as it can significantly improve the health and lifespan of people with Down syndrome. People with Down syndrome are predisposed to certain medical conditions – an estimated 50 percent will be born with congenital heart defects, upward of 70 percent are estimated to have sleep apnea, and up to 50 percent will have the early onset of Alzheimer’s disease. Ask your Senators to commit to supporting funding for research by voting for the Moran Amendment!
March 20th, 2013 by Global Down Syndrome Foundation
The Linda Crnic Institute for Down Syndrome awarded $1.3 million to 14 inaugural recipients of the Crnic Grand Challenge Grants today. The grant recipients were chosen based on the strength of the science and the likelihood the science would lead to improving outcomes for people with Down syndrome.
The Crnic Grand Challenge Grants program was established earlier this year by Tom Blumenthal, Ph.D., executive director of the Crnic Institute. The grants are available to scientists from the University of Colorado system and were awarded to researchers from various disciplines at the University of Colorado at Boulder, and the University of Colorado Anschutz Medical Campus.
Thirty-six grant proposals were reviewed by an elite group of scientists.
“The decision on which grants to fund was incredibly difficult because of the diverse, meaningful research proposed by the scientists,” Blumenthal said. “We had initially planned to fund 10 grants totaling $1 million for the first year, but we funded $1.3 million for 14 because of the truly impactful research that was proposed and is now being funded.”
March 14th, 2013 by Global Down Syndrome Foundation
Huntington Potter, Ph.D., Director of Alzheimer’s Research at the Linda Crnic Institute for Down Syndrome and the University of Colorado School of Medicine’s Department of Neurology, was inducted into the National Academy of Inventors by being named a Charter Fellow.
Potter’s groundbreaking research in the field of Alzheimer’s disease led to the discovery of the mechanistic relationship between Alzheimer’s and Down syndrome. During his esteemed career, he invented the first practical electroporation device for making transgenic organisms and has been awarded 15 U.S. patents, including several on diagnosing and treating Alzheimer’s disease.
Potter is among 101 innovators from 56 research universities and nonprofit institutes to be inaugural fellows and was inducted by the United States Commissioner of Patents, Margaret A. Focarino, at the 2nd Annual Conference of the National Academy of Inventors on Feb. 22 in Tampa, Fla. Inductees include eight Nobel Prize winners, and four recipients of the National Medal of Science, including Robert Gallo, who co-discovered the HIV virus, Solomon Snyder, who discovered the mechanism of addiction, and Nick Holonyak, who invented the first practical LED.
“Throughout his career, Huntington Potter has demonstrated the leadership and innovation the selection committee looked for in charter fellows,” said Paul Sanberg, president of the National Academy of Inventors and senior vice president for Research & Innovation at the University of South Florida. “His work has contributed materially to the understanding and treatment of Alzheimer’s disease — in particular, his discoveries regarding amyloid formation and Alzheimer’s connection to Down syndrome were breakthroughs in the field.”
Potter’s recent research includes the GM-CSF treatment for Alzheimer’s, which involves the drug Luekine. GM-CSF is a protein that is secreted by patients with rheumatoid arthritis that may help explain why those patients rarely develop Alzheimer’s disease. Mice with Alzheimer’s disease that have been injected with Leukine were cured, and the invention is being proposed as a treatment for Alzheimer’s in humans, with clinical trials underway in Tampa and soon to follow in Denver.
March 12th, 2013 by Global Down Syndrome Foundation
Applications for the 2013 Global Down Syndrome Educational Grants are now available! The grant program, a joint venture of the Global Down Syndrome Foundation and the National Down Syndrome Congress, awards local Down syndrome organizations with grants of up to $15,000 each to launch educational programs to benefit the Down syndrome community.
Local Down syndrome organizations that are affiliates of the National Down Syndrome Congress are welcome to download an application for full details. All materials are due May 3rd, 2013, in order to be considered for this year’s grants, which will be announced in July at the National Down Syndrome Congress Convention in Denver.
This is the second year for the Global Down Syndrome Educational Grants. We were excited to receive more than 30 submissions for the inaugural round of grants in 2012, with some excellent educational ideas! The first recipients were Down Syndrome Association of Greater Richmond, Down Syndrome Association of Northern Virginia, Down Syndrome Society of Mobile County, Gold Coast Down Syndrome Organization, Down Syndrome Foundation of SE New Mexico, and Down Syndrome Connection of the Bay Area.
Visit the Global Down Syndrome Educational Grants page for more information, and good luck to all applicants!
March 7th, 2013 by Global Down Syndrome Foundation
The Global Down Syndrome Foundation’s hallmark fundraiser and inspiring awareness-builder, the Be Beautiful Be Yourself Fashion Show, won big at the ICON Awards held at the Grand Hyatt Denver Hotel on March 1, garnering four ICONs, including the People’s Choice Best Overall Event over $75,000. The Global Down Syndrome Foundation’s fashion show also received People’s Choice honors for Best Invitation, Best Entertainment Concept and Execution, and Best Social Event Produced for a Nonprofit.
The ICON Awards recognize event excellence in Colorado and were established by Terry Vitale in 2000 as a celebration of the event trade in Colorado. One of Vitale’s publications, Colorado Expression Magazine, organizes the national panel of judges and the ICON Award gala every year. This is the third consecutive year for the Be Beautiful Be Yourself Fashion Show to receive an ICON Award for Best Overall Event.
“We are so grateful to the judges and to our professional community for acknowledging our hard work and the unique event Global is able to produce each year. Our ICON Awards are really a testament to our models with Down syndrome who can rock your world and inspire you to be better people all in one night,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. “The ICON Awards are also meaningful as a testament to my hardworking staff and the amazing Event Committee and volunteers we have. At the end of the day, we couldn’t be more thankful for being recognized for raising awareness and critical, sometimes lifesaving funds for the Linda Crnic Institute for Down Syndrome.”