John and I were honored to be a part of the third annual Los Angeles fundraiser for DSRTF last night at Twist Restaurant in Hollywood. This is my second time attending (first time for John), and for the second time, I left the fundraiser filled with tremendous hope for Jack's future. For the second time, Dr. Mobley and Dr. Harpold brought me to tears as they spoke from the heart about their life's passion...research that makes it a very real possibility that potential treatments will significantly improve cognition in all individuals with Down syndrome. One year ago, as I sat and listened to Dr. Mobley speak, there had been two potential therapeutic targets identified to improve memory and learning in people with DS. Yesterday, we learned that there have been two more identified, one being in the last three weeks.
What the general public may not know is that most people with DS develop the pathology of Alzheimer's in their 40's. Because of the research funded by DSRTF in the past four years (yes, it is THAT new!), the specific gene associated with the decline on cognition associated with Alzheimer's has been identified (and not just related to Down syndrome...this is related to all who develop Alzheimer's. So why bring this up? Well, apparently, the Federal Government doesn't put any worth or importance on individuals with Down syndrome. In fact, as one example, Federal funding for Cystic Fibrosis (35,000 individuals affected in the US) is about $2,800.00 per person. Federal funding for Down syndrome(350,000 individuals affected in the US) is about $40.00 per person. Anyone else see anything wrong with this picture? I, for one, am saddened by these numbers. My husband, on the other hand, is "pissed off" by these numbers. So what can we do? Well, number one is to take the back door approach...maybe no one in government thinks DS research is important...but they do care about Alzheimer's Disease. Let's get our government officials to realize that funding DS research has a high potential of unlocking the mysteries of Alzheimer's. This benefits all people, including my baby...This seems to be the best way to get more funding...Number two, support DSRTF. This foundation's mission is to improve cognition for individuals with Down syndrome...they call it "the breakthrough." I tend to agree...we have to make this happen...and we will.
I highly recommend looking into DSRTF and all of the great work they are doing for individuals with Down syndrome. I will always have a place in my budget to donate to this worthy organization.
1 comment:
$40.00 per person?! That breaks my heart.
We raised some money for DSRTF too--just topped $7,000 in donations. It really is up to us as parents to get out there and raise awareness about this research potential. Thanks for doing just that!
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