Governor Rod Blagojevich proclaims May 2008 Tay-Sachs Awareness Month in Illinois.
Breaking News: Governor David Paterson has Proclaimed July 2008 as Tay-Sachs Awareness Month in New York and Governor Sonny Purdue has Proclaimed October 2008 as Tay-Sachs Awareness Month in Georgia
We need your help!!
Ohio Senator Sherrod Brown is going to introduce a Senate Resolution Proclaiming September 2008 as National Tay-Sachs Awareness Month!! We need everyone to write a letter of support to Senator Brown - even if you don't live in Ohio. Senator Brown and his staff can rally support is we can provide hundreds of letters of support from all over the country. Julie Bihn has sent her letter and it is posted here so you have a starting place. Tell your story, about your child, family member or friends child that is battling or was lost to Tay-Sachs disease. We can make this happen!
Tay-Sachs kids video click here
We have two billboards on Interstate 90 on the west side of Cleveland between West 117th and Warren Road (on the south side) the Ryan Babo and Conner Hopf billboards are currently up replacing the Dakota Bihn and Elise Rochman billboards.
Artwork of Tay-Sachs Kids by Ralph Keefner
CTSF $50,000 Grant Press Release
Tay-Sachs families talk about the disease
(12 minutes long - click play below)
Did You Know...
November 2006 was Tay-Sachs Awareness Month in Maryland
November 2007 was Tay-Sachs Awareness Month in Ohio and December in Missouri
March 2008 was Tay-Sachs Awareness Month in Florida April 2008 is Tay-Sachs Awareness Month in California, May 2008 is Tay-Sachs Awareness Month in Illinoisand President Bush is considering a Presidential Message calling September National Tay-Sachs Awareness Month.
Gene Therapy
Cooperation among five highly respected research institutions has created the Gene Therapy Consortium. Gene Therapy uses modified virus cells as vehicles to transport and duplicate Hex-A enzymes into the brain. The technology has shown great promise in animal models and the current research plan (if properly funded) targets clinical trials in the next three to five years. Learn more...
Gene Therapy in the News: The Boston College Chronicle has an article in its February 14, 2008 Edition on Page 4 about the Tay-Sachs Gene Therapy Consortium.
Visit the Tay-Sachs Gene Therapy Consortium website at www.tsgtconsortium.com.
To see video of mice treated with gene therapy, click here.
Our Mission
The Cure Tay-Sachs Foundation is dedicated to funding the on-going research needed to find treatments and a cure for Tay-Sachs Disease.
Once the cure for Tay-Sachs has been found - and we will find it! - we will dedicate our efforts to promoting carrier-testing and Tay-Sachs awareness initiatives.
To begin the journey into Tay-Sachs Awareness, click here.
"One in a Million"
Have you ever heard the expression "One in a million?" I am sure most everyone has. I'd like to try and explain what "one in a million" means to me.
The chances I would have a child affected by Tay-Sachs disease seemed like "one in a million." I had never even heard of the disease before my child was diagnosed with it. Now we battle with the "one in a million" odds that we can find a cure in time to save my beautiful daughter.
We all think the odds are so remote, we don't need to worry about the hundreds of rare disorders. When the odds catch up with you, everything changes.
Let me try and put it into perspective for everyone... read more
