Navigation Links
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.


'/>"/>
SOURCE Cure Tay-Sachs Foundation
Copyright©2007 PR Newswire.
All rights reserved

Related medicine news :

1. Vermont Governor steps in with a new health insurance plan.
2. Arkansas Governor Explains New Health Plan Insurance On Radio Show
3. Massachusetts Governor To Sign Health Coverage Bill
4. Aids Seems More Prevalent Among Goan’s – Governor Visiond
5. Tamil Nadu Emerging As Model State In Public Health Care: Governor
6. The National Governors Association Releases Guidelines For Outbreak Of Bird Flu
7. New York Governor to Introduce Bill to Strengthen Abortion Rights
8. Maverick Gay Ex-governor Turns a New Leaf - Accepted at the Episcopalian Seminary
9. Maverick Gay Ex-governor Turns a New Leaf - Accepted at the Episcopalian Seminary
10. WHO Declares Vietnam First Country to Control SARS
11. Prime Minister Declares War on AIDS
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:10/13/2017)... ... ... “The Journey: From the Mountains to the Mission Field”: the story of a ... “The Journey: From the Mountains to the Mission Field” is the creation of published ... all ages and currently teaches a class of ladies at her church, which she ...
(Date:10/12/2017)... Orleans, LA (PRWEB) , ... October 12, 2017 , ... ... centers in the U.S., announced today its plans to open a flagship location in ... will occupy the former Rooms To Go store next to Office Depot in the ...
(Date:10/12/2017)... ... October 12, 2017 , ... Asante, ... post-acute health care, have expanded their existing home health joint venture through an ... has been operating a joint venture home health company with Asante, delivering clinically ...
(Date:10/12/2017)... ... October 12, 2017 , ... Leading pediatric oncology experts ... Washington, D.C., for the 49th Congress of the International Society of Paediatric Oncology ... of the Center for Cancer and Blood Disorders at Children’s National, and ...
(Date:10/12/2017)... ... 2017 , ... In the United States, single-family home owners ... New York, New Jersey, Massachusetts, Texas, Virginia, Connecticut, and California—the average is $7,000 ... property-tax rates, which contributes to the relatively lower cost of living in places ...
Breaking Medicine News(10 mins):
(Date:10/4/2017)... Oct. 4, 2017  South Korean-based healthcare product Development ... aide "cprCUBE" on Kickstarter. The device will educate the ... arrests with better efficiency compared to the dated and ... feedback on efficacy of the compression for a more ... a goal to raise $5,000. ...
(Date:10/2/2017)... INDIANAPOLIS , Oct. 2, 2017  Eli Lilly ... its financial results for the third quarter of 2017 ... a conference call on that day with the investment ... performance. The conference call will begin at ... public can access a live webcast of the conference ...
(Date:9/28/2017)... , Sept. 28, 2017 Hill-Rom Holdings, Inc. ... earnings conference call and webcast on Friday, November 3, ... (EDT) and ending at approximately 8:30 a.m. (CDT) / ... the company,s 2017 financial performance and guidance for 2018, ... initiatives to enhance operational performance, and long-range financial outlook ...
Breaking Medicine Technology: