Sunday, October 12, 2008

DSRTF Fundraiser-One Extra Reason to Live.Love.Hope

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.

These were the centerpieces...they were old film canisters with pics of kiddos with DS on them...notice my little man Jack making his debut! I don't know if we were allowed to take them...but I did! LOL...I wasn't the only one!

Thursday, October 09, 2008

Friends Forever!

The cutest little things ever...

Seriously...this pic makes me is the sweetest thing ever!

Sunday, October 05, 2008

Hodge Podge...

Soccer Stuff...Bella scored another goal this weekend! YES! She's getting better and better each week...Now...if we could only get her to stop dancing on the soccer field, LOL! My mom and mother in law came to cheer her on...I tend to yell...ALOT...during the games. I heard my mom say, "Oh no...she's one of *those* moms!" LOL! Yep, and proud of it!

Grant--Started Waving and Clapping this weekend! I think he's saying "Hi!" when he waves! He is sooooo proud of himself!

And for those that haven't heard...Jack got glasses for up close stuff! He is ADORABLE! And, he keeps them on pretty well...shocker! Here is the cutie pie in his new shades!

This is What Happens When Mom is Gone...LOL