This Just In!!

 

Dear Friends of Fragile X,
 
I wanted to make sure you were among the first to hear the exciting news about the awarding of the largest Fragile X research grant in history. The National Institutes of Health (NIH) has just announced a $21.8 million Fragile X research grant which has been awarded to Dr. Paul Hagerman at UC Davis, and a very large research team that includes his wife, Dr. Randi Hagerman.
 
Dr Hagerman, his colleagues at the UC Davis School of Medicine, the UC Davis Medical Center’s M.I.N.D. Institute and at four allied institutions (Erasmus University in the Netherlands, University of Washington in Seattle, Scripps Institute in Florida and University of Colorado in Denver) will be working on translational research to help those affected by Fragile X. The research will focus on fragile X-associated Tremor/Ataxia Syndrome (FXTAS), along with fragile X syndrome. This research effort will include clinical trials in FXTAS, animal studies, molecular interventions, neuroimaging studies, as well as basic research to identify new treatments for these disorders.
 
I spoke with Dr Hagerman and he wants to thank everyone who has donated to the National Fragile X Foundation. He explained that it was the NFXF that provided the seed grants to he and Randi that supported the early stages of their research, which led to this largest ever NIH grant for FX.
 
These $50,000-$100,000 seed grants were awarded by the NFXF’s Scientific and Clinical Advisory Committee (SCAC) http://www.fragilex.org/html/advisorycommittee.htm which is made up of some of the best and brightest worldwide and is responsible for reviewing and awarding each and every grant request received by the NFXF.
 
I am celebrating this grant to the Hagerman team and also want to acknowledge the truly valuable work of the Foundation’s SCAC in making the most of our research budget while we help families today with real life issues.
 
I know I am not alone in offering my congratulations to the Hagermans who have worked for so many years to help everyone who is touched by Fragile X. Their research is sure to lead to exciting new developments that will translate into help for the entire FX community.
 
To learn more visit www.fragilex.org in the days ahead.
 
Thank you!
 
Arlene Cohen
a.cohen@fragilex.org
National Fragile X Foundation
www.FragileX.org
1-800-688-8765

Jello Pastel Cookies

Matthew’s class cooks every Wednesday.  I love that about his classroom.  It is geared for them to learn life skills so it has a full kitchen, just like in a home.  Once a month they walk down to Safeway and buy their groceries for the month.  So they also learn how to be respectable in public and how to shop!

Anyhow, yesterday they made Jello Pastel Cookies.  The kids bring the recipe home for their cookbook.  I found the recipe online.  It looks really easy.  He brings home some of the finished product and Lauren and I really liked these cookies.  So I linked to the recipe up there and put in down there if any of you want to try them out and maybe you can make them with your auties/fraggles. 

JELLO PASTEL COOKIES

3 1/2 c. flour 1 tsp. baking powder 1 1/2 c. butter 1 c. sugar 1 (3 oz.) pkg. Jello, any flavor 1 egg 1 tsp. vanilla Mix flour with baking powder. Cream butter, gradually add sugar and gelatin, beating well. Beat in egg and vanilla. Gradually add flour mixture, mixing well. Force dough through cookie press onto ungreased baking sheet. Sprinkle with additional gelatin (same flavor). Decorate, if desired. Bake at 400 degrees about 8 minutes or until edges are golden brown.