Archive for the ‘Blog’ Category

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.”

Read the full press release, and view the workshop agenda and impressive lineup of speakers.

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:

Casting Form for Toys R Us Differently Abled Catalog

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!

See the official proclamation

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

See the official proclamation

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.

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!

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.”

Read the full press release and see a full list of the grants.

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 2^nd 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.

Read the full press release on the Global Down Syndrome Foundation’s press page.

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!

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.”

Read the full press release

Friday November 15, 2013 – Friday November 15, 2013

231 Milwaukee Street

Map and Directions | Register

Description:

Register Now!

Dance the Night Away

at the Global Down Syndrome Foundation’s 

I ♥ YOU Dance Party!

Join Us November 15^th for the  I ♥ YOU dance-a-thon at Cherry Bar and Dance Parlor, 231 Milwaukee St. in Cherry Creek North in Denver. If you are 16 or over, love to dance and just happen to have Down syndrome, this party is for you!

The Global Down Syndrome Foundation’s Young Professional Committee is organizing dance partners and pals for the night. It starts at 6:00pm and ends at 9:00pm. There will be plenty of food, a signature cocktail (for those over 21) and a dance floor to bust a move!

All you need to do is dress up and show up to get down! The dance is free, but we hope you can help us by making a donation to help support the Global Down Syndrome Foundation’s activities – the suggested donation amount is $25.

View more photos from the inaugural I ♥ YOU Dance Party.

For questions about the Global Down Syndrome Foundation’s I ♥ YOU Dance Parties, contact Martha Cronen at mcronen@globaldownsyndrome.org or 303-468-6674. In the meantime, get ready for a fabulous dance party – we look forward to seeing you on November 15th!

By signing up below, you agree to be added to the Global Down Syndrome Foundation’s mailing list.

Register

A University of Massachusetts study to correct the over-representation of chromosome 21 genes in people with Down syndrome is among three grant recipients to receive $1 million each, The John Merck Fund announced Wednesday. The Fund’s new multi-year Translational Research Program supports scientists in developing treatments and improving outcomes for people with Down syndrome and Fragile X syndrome, the Fund said.

The Fund anticipates making 10 grants awards of $1 million each, the first three of which were announced this week.

“What’s especially exciting about this program is that is supports research with potential game-changing impact that is within the realm of probability — not just possibility — and could be achieved within 10 years,” said Marsha Mailick, Ph.D., Chair of The John Merck Fund’s Scientific Advisory Board.

Jeanne B. Lawrence, Ph.D., Interim Chair and Professor of Cell and Developmental Biology & Pediatrics at the University of Massachusetts Medical School, will study the deactivation of one of the three copies of chromosome 21 in order to functionally correct the trisomy seen in people with Down syndrome.

“The overall goal in this project is to translate recent developments in understanding these basic epigenetic mechanisms to a new research frontier in chromosome pathology that accelerates clinical translational progress in Down syndrome,” the Merck Fund said.

Other grant recipients include:

Dr. Craig A. Erickson, Assistant Professor of Pediatrics, Division of Child and Adolescent Psychiatry at Cincinnati Children’s Hospital Medical Center, who will study acamprosate (a drug that is already FDA-approved for treating alcohol dependence) as a treatment for youths with Fragile X syndrome.

David R. Hessl, Ph.D., Associate Professor of Clinical Psychiatry at the University of California David MIND Institute, who will study cognitive or behavioral treatments of Fragile X syndrome and evaluate the efficacy of Cogmed, an online training program proven to enhance working memory and executive function, but not yet with Fragile X syndrome.

Information on applying for future grant awards under the Merck Fund program can be found on the fund’s website. Initial submissions for the next round of grants are due May 15, 2013.

Congratulations to all the grant recipients, and we look forward to seeing what comes of their research in the coming years.