On Thursday, January 28, 2010 Dakota and I had the priviledge of joining Sherri and Brian Manning at the Pins for Kids Wrestling event at St. Marks High School in DE. Started in 2005 by Zach Frederick after meeting DJ Manning, the program is today carried forward by Jay Bastianelli (St. Marks Wrestling Coach) and Lyle Frederick (Zach's Dad) with support from St. Marks wrestlers and teams from Smyrna, Salesianum and Ashton-Franklin Center High School (Ashton, Ill.). The Pins for Kids initiative has raised over $70,000 to support Tay-Sachs disease research!! Vice President Joe Biden even took notice and sent a letter to Dakota and I thanking us for our participation!! Where were honored to attend and thank all who support this wonderful program!!
The Cure Tay-Sachs Foundation has put a number of collection buckets in various businesses, but the most successful collection bucket EVER is at Harrison's Restaurant in MA. They have collected over $1,000 since November 2009 from generous customers and employees!!. See picture right of Liz Warren (CTSF Advocate)and Mike McMains (Harrison's Manager). Thank you both for helping us find a cure!!
The key to our research in 2010 is to effectively treat an affected cat. We have dubbed 2010
"The Year of the CAT"!!
CTSF Receives One Millionth Donated Dollar!!!
The Cure Tay-Sachs Foundation topped the $1 million mark in donations on October 23, 2009 at the Charity Auction - with 5 Cleveland Browns on hand, the foundation blew past the $1 million mark and finished the day more than $40,000 into a second million!!
Thanks a MILLION to everyone that is kind enough to donate to our cause - we are making wonderful progress!!!!
Click play to view THANK YOU video
Largest Tay-Sachs Grant in History!!!
On August 20, 2009 the National Institutes of Health (NIH) awarded the Tay-Sachs Gene Therapy (TSGT) Consortium a four year $3.5 million grant!!!
Your support played a huge part in moving the research forward and positioning the TSGT to get the grant - Thank You so very much!!!
Video, Artwork, Press Release & Audio !
Tay-Sachs Awareness Video - see Dakota and her friends click here
President Bush offers his greeting and appreciation for our efforts - see message
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.
May 2009 was Sandhoff Awareness Month in Idaho; December 2009 will be Tay-Sachs Awareness Month in West Virginia
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.
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
