Thursday, December 30, 2010
Christmas and Down syndrome research
Santa made his way to our House. And I have the picture to prove it.
Santa is a sucker and somehow fell for Ethan’s “I was a very good boy this year!”
And I don’t what lies my girls told Santa as well, but he was very generous to them as well.
But amongst all the fun of Christmas and its magical ways, I always remind my girls the reason for Christmas. Yes, the birth of our Lord, Jesus Christ! We even baked him a cake and sang happy birthday to Jesus. We threw an assortment of candles from over the years and said a little prayer.
And we shared our cake with Santa. “He tore it up” according to Gabby.
Because I am so passionate about my son’s future, his friend’s futures, all those other children that will continue to be born with Down syndrome and for every single person out there with Ds, I am asking you all for a favor:
Help Down syndrome research receive a grant!
I hear it ALL the time, about the lack of Down syndrome research and how we get pennies compared to other illnesses, disorders and such for research. But what ARE YOU doing about it?
Right now I know everyone is fired up about the Etsy shop and Etsy’s irresponsible and unethical way of handling it. Parents are coming together to make a difference. YES I am bothered and I hope Etsy does something about it SOON. Now if all these parents would also come together and do something in regards to Ds research, we CAN BE HEARD. Sure, I will sign the petition to bring that Etsy shop down, but my energy I will focus on Ds research. Ds Research can change the life of our children. Even if it doesn’t happen now, Down syndrome doesn’t have to be what it is! IT DOESN’T HAVE TO BE.
Take a stand and show the National Institute of Health and the rest of the world that we CARE about our children and that a market does exist of us parents/caregivers/ friends of people with Down syndrome that want better for our children. We are not trying to cure Ds. We are trying to help our children achieve their dreams!
Paul Watson is organizing a petition to present to the NIH to prove we need funding for Ds. He has received a great amount of petitions but would like to double the numbers by January 4th. Please forward to all of your friends and help make a difference!
Who is Paul Watson you ask. Paul has a 9 year old son with Ds. Lives in Dallas and is a pilot for SW airlines. He is on several boards and committees that serve people with disabilities. You can even contact him directly and he is more than willing to tell you more.
Below s a message from Paul Watson and what you can do:
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.
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.
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!
Merry Christmas and Happy New Year!