Posted at March 27, 2013 | Categories : 2013,Advocacy,News Reports and Commentaries | 6 Comments

Public Policy at Work: Abbeduto Given $3M NICHD Grant to Study Fragile X

The UC Davis MIND Institute reported on its website that a $3 million grant will allow their research team to investigate the effectiveness of testing procedures to examine the spoken language development of people with fragile X syndrome and people with Down syndrome.

The grant was awarded by the Eunice Kennedy Shriver National Institute of Child Health and the Human Development of the National Institutes of Health. The study will evaluate the reliability and sensitivity of a language-evaluation procedure that Abbeduto has pioneered for two decades called expressive-language sampling.

MIND Institute Director Leonard Abbeduto, PhD, who is leading the team, says, “Language improvement is an important target for many of these promising new drugs. However, we don’t yet have tools sensitive and accurate enough to measure change in language in clinical trials. This study may lead us to understand the efficacy of these drugs.”

The grant is the latest in a long line of such awards the MIND Institute has won over the years to research Fragile X, including a $21.8 million award in 2007 to study both FXS and FXTAS.

On this latest award, Jeffrey Cohen, NFXF director of government affairs, comments:

This grant is funded by the NICHD. Every year for the last 10 years our advocates have gone to Washington, DC on National Fragile X Foundation Advocacy Day to ask for continued and increased funding for the NICHD and for directive appropriations language from Congress to the NICHD to help guide the direction that research funding takes.

The reason the dollars allocated to Fragile X have continued to grow over the years is because we continue to go back and push every year and to report on the exciting progress we are making in Fragile X research.

Our public policy team is in regular communication with NICHD. We also asked Congress to create the Fragile X Research Plan authored by the NICHD. Congress mandated such a plan because we asked them to. We participated both in the initial process to create the plan and to update it in 2012.

This kind of funding going to UC Davis and many other labs around the country is a direct result of the advocacy and public policy efforts of the NFXF and, most importantly, of the commitment made by more than 1,000 advocates who have traveled to DC, along with many thousands more who support this effort both financially and by calling and writing letters to their Members of Congress. I can say with confidence that very little of this would have happened without the NFXF’s formal advocacy program that began in 2002. Today is one more day in which all our advocates can be justly proud of what they have accomplished.

You can help continue this trend by donating to this year’s Public Policy Campaign! Please do so today to help fund these continuing efforts.

UPDATE 3/29/2013: Earlier we had reported that this grant was to study the efficacy of drugs. The grant is actually to evaluate the reliability and sensitivity of language-evaluation procedure that might one day be used to study the efficacy of drugs.