I'm posting this letter from my sister regarding my nephew, Jack, who has Down Syndrome.  I am involved in helping support and raise funding for DSRTF as well and plan on releasing a cd where 100% of sales will go to the DSRTF Foundations.  Please take a moment to read this.

Thank you -
Carlos Villalobos, Jr

Dear Family and Friends:

Since his birth, as Jack’s parents, we have tried to expose Jack to as many classes, therapies, and experiences as possible in order to expand his world and enrich his life. Over time, however, it has become increasingly clear that he, like others with Down Syndrome, needs real science in his corner to help him integrate successfully at school or work. This is why I am seeking your support for a fundraiser I have organized to benefit Down Syndrome Research and Treatment Foundation (“DSRTF”). The mission of Down Syndrome Research and Treatment Foundation is to stimulate biomedical research focused on improving cognition in individuals with Down Syndrome (“DS”). The goal is to improve learning, memory, and speech to enable those with Down Syndrome to participate more actively in school, lead more independent lives, and avoid early onset of Alzheimer’s Disease. Although Down Syndrome is the most common genetic cause of intellectual disability, affecting one in every 800 births, the National Institutes of Health’s funding for DS research amounted to only $55/person last year.

As recently as 2004 there were no defined biological mechanisms known to have a direct correlation with cognitive impairment in Down Syndrome. Since DSRTF’s founding in 2004, there has been dramatic progress. There are now five independent studies showing the promise for improving cognitive function for individuals with Down syndrome. Clinical trials are underway on two drugs to improve cognition and one treatment to halt the development of the plaques associated with Alzheimer’s disease. Since a majority of persons with Down Syndrome will show the neuropathology of Alzheimer’s disease by age 40, a drug that will prevent or halt Alzheimer’s disease means preserving all the gains they worked so hard to accomplish during their lifetimes. This research also underscores the fact that research that will benefit persons with Down Syndrome will also benefit persons without Down Syndrome. Moreover, since persons with Down Syndrome have a lower incidence of solid tumor cancers and coronary heart disease than the
rest of the population, studying the physiological mechanisms in Down Syndrome will help scientists explore these medical conditions which will benefit the general population. For all these reasons, I am organizing a charity concert in Wilmette, Illinois to benefit DSRTF. While I expect that you will not be able to attend the concert, I urge you to make a donation.

As recently as 10 years ago, it was thought that Down Syndrome was too complicated to understand.

A revolution in neuroscience, however, has brought new possibilities. We cannot lose hope now. Your contribution helps ensure the continued progress of this groundbreaking research. Go online to www.dsrtf.org and make a gift in honor of “Jack Pirrie”. If your company, or one you know, would like to make a corporate contribution, please contact DSRTF at dsrtf@dsrtf.org. In whatever way you can, join the DSRTF movement and help bring us closer to our goals.

Barbara M. Villalobos
Jack’s mom

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