Sunday, January 2, 2011

CALL TO ACTION

two posts in one day? what is the world coming to, LOL! Seriously, this is BIG!! Forgive me if I have sent this to you directly already and if I have I THANK YOU for helping advance those we love with Down syndrome. If you haven't already helped support this important initiative, please take a moment to help make a difference in the lives of someone you love because if you are reading this blog, you DO know someone and LOVE someone with DS. Don't think your name doesn't matter, it does and if you feel led, write a quick comment about our family and our precious boy. Help give Parker the same freedoms you all enjoy!

PETITION REQUEST:
Today is the day I need you to step forward with a small act to support Down Syndrome research. No money, just your name and words are needed.
PETITION REQUEST:

We are on the verge of revolutionary human clinical FDA trials for medication to raise learning, memory and communication in Down Syndrome. These trials are expensive, more than charity can handle, and more than pharma companies will take on when they are unsure if a market exists. We can show them a market exists and influence the National Institute of Health to help bridge the funding gap NOW by having you join a petition and by presenting your commentary!

There is a major grant request under review at the NIH to initially fund a start up pharmaceutical's FDA trial of a medication developed by Stanford DS researchers that has improved learning performance in DS mice and shown to be usable in humans. We MUST get this funded.

In 2009, the NIH provided 18 million dollars for DS research. DS affects about 400,000 Americans. In contrast, autism (which affects 560,000) got 132 million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162 million. Why? Because the families of people with these issues are very active in lobbying for this and being involved at the federal level, and we have not been. The view from the govt and pharma is that we don't care about developing the medications that are within reach that could really change our kids outcomes in life, so they focus elsewhere. Time for things to change!

So join me today in saying this to the NIH decision makers:

We, the members of the Down Syndrome community, strongly urge support for the development of FDA approved medication to raise learning, memory, and communication for those with DS. We particularly support this grant application: the NINDS Cooperative Program in Translational Research - Small Business Awards (SBIR [U44]), Principal Investigator Elizabeth Moyer, PhD.

Your steps:
1) email me to add your name and email address to the petition. just say "add" with your name and email address
2) if possible, take 5 minutes and email me a few sentences showing your support--include your name, address, and telephone #. This will be far more powerful than just the petition. I will consolidate comments and give to the head of the grant application process.
3) call or email me if you need more info

Time is critical in this process, so please act now! We want to deliver the petition by January 4th!!! And please forward to all your friends and family.

Merry Christmas and Happy New Year!

Thank your for taking the time to help. The squeaky wheel gets the grease. Help us get the grease!

Sincerely,
Teresa Cody
email me at changingmindsfoundation@gmail.com

2 comments:

  1. =)
    will you be at the DSAH meeting on the 19? one of the researchers from Research Ds along with Paul Watson, who is the one who started sending this petition will be there..

    ReplyDelete

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