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Governor Strickland Declares November Tay-Sachs Awareness Month
Date:11/2/2007

Dakota's Dream to highlight month long fund raising events to find the cure

CLEVELAND, Nov. 2 /PRNewswire-USNewswire/ -- Ohio Governor Ted Strickland has officially declared November as Tay-Sachs Awareness Month and encourages all Ohio citizens to understand the importance of genetic testing and the need for research to help find a cure. Tay-Sachs disease is a genetic disorder that is found most frequently in Ashkenazi Jews, French Canadians, Louisiana Cajuns, and Irish Americans. One in every 250 people is a carrier of the Tay- Sachs gene, a disease that has no known treatment and is always fatal in children. The governor's timely declaration was great news to Cure Tay-Sachs Foundation (CTSF) President Ken Bihn, whose eight year old daughter Dakota is suffering from the terminal disease. Ken, along with his family, friends and other Tay-Sachs affected families formed the CTSF earlier this year and were granted tax exempt status as a 501(c)(3) corporation by the Internal Revenue Service.

The CTSF has initiated a series of events this November to raise awareness of both the disease and hopeful research initiatives. "We are active participants in the Tay-Sachs Gene Therapy Consortium, an international collaboration of researchers from Auburn University, Boston College, Cambridge (UK), Harvard Medical School and Massachusetts General Hospital. This therapy has shown great promise in animal models and our goal is to be conducting clinical trials in as little as three years," said Ken from his Cleveland headquarters. "This is not just about Dakota, but for every child and family that has been or will be affected in the future if we do not find a cure. Time is not in our favor with Dakota, so we chose November, our month of Thanksgiving, to try to educate the world about Tay-Sachs and raise awareness of this unpublicized killer."

Dakota Bihn was diagnosed with the juvenile form of Tay-Sachs and doctors told the Bihn family that Dakota would likely be in a vegetative state by the end of 2006. After learning the news, Ken and his wife Julie decided to try an experimental cord blood transplant at Duke Medical Center in January of 2006. The procedure destroyed her existing blood and replaced it with new blood rich in the enzyme missing with Tay-Sachs disease. The hope was that this would stop or slow down the degenerative neurological damage. Having battled the disease for nearly two years since the transplant, Dakota continues to attend school but is slowly losing mental and physical capabilities. The Cure Tay- Sachs Foundation is convinced that a cure is within reach if we can raise awareness. "Science is ready to cure this disease if we are prepared to support them," Ken Bihn believes.

On Saturday, November 24, the Dakota's Dream Fundraiser will take place all over the United States, with children going door to door collecting donations to make Dakota's dream of finding a cure come true. The Foundation's target is to get 1,000 of Dakota's friends collecting $100,000 on this one Saturday alone. "We have heard from groups all over the Cleveland area, and even groups in seven other states that are willing to spend a few hours collecting for Dakota and the other sick children," said Julie Bihn, Dakota's mom. "We have businesses and churches all over the Cleveland area that are collecting money in their own way, as well as many schools, soccer teams, church groups and neighborhood kids all signed up to help. The outpouring of affection and the willingness to help has blown us away." In addition to collecting throughout the neighborhoods, the group plans to be collecting at stores, shops and strip malls during the Thanksgiving holiday weekend. In early November the CTSF will be providing Dakota' Dream collection cans that will be used to collect money for the cause. The campaign ends on Saturday, November 24 with a celebration and collection of the donations at the Olmsted Falls Community Center, 8170 Mapleway Drive, Olmsted Falls, Ohio 44138 from 3pm to 5pm. The celebration will include food and prizes for all of Dakota's friends.

To sign up to be a part of Dakota's Dream or to be a volunteer to help collect money, donate time or services or join the Cure Tay-Sachs Foundation, please visit our web site at http://www.curetay-sachs.org. Any youth group leader who would like to register their team of children to collect on November 24, please e-mail the CTSF and we will arrange to have the collection cans delivered to your school, church or youth group. Please e-mail any requests to ken.bihn@curetay-sachs.org.


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SOURCE Cure Tay-Sachs Foundation
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