Friday, July 29, 2011
Reading and Discussion, Saturday, August 6th
Saturday, August 6th at 6pm will be a reading and discussion of "The Thousand Mile Stare" - One Family's Journey Through the Struggle and Science of Alzheimer's, at the Amagansett Library on Main Street in Amagansett. Please join us.
Friday, July 22, 2011
DIAN and the ICAD
Exciting news regarding the progress of research has emerged from the ICAD (International Conference on Alzheimer’s Disease) held the third week of July in Paris, France. Associated with the news from ICAD is a Reuters News print article and video about the Reiswig family. My cousin, Lawrence, and his son, Marty, were interviewed for the piece. It is inspiring to see the progress of world research efforts and to participate in that process. The cooperation and dedication of families, along with the work of scientists and researchers, will contribute immeasurably toward developing treatments for Alzheimer’s disease. http://www.reuters.com/article/2011/07/20/us-alzheimers-idUSTRE76J1L020110720
Early onset or younger age Alzheimer’s is a rare form of the disease. Not all causes of early onset Alzheimer’s are known, but our family carries an autosomal dominant gene mutation that causes it. In fact, there are three gene mutations in the world that cause the familial version of young onset Alzheimers. Our gene, PS2, sometimes called the Volga German Gene, is the rarest of the three. Each child of a parent who carries the mutation has a 50/50 chance of getting the disease. If someone is in line to inherit the gene, when should that person be tested to find out if they have it? Wait until symptoms appear, or before? It is a private question that must be answered by each individual in line for the gene.
A number of our family members are enrolled in the DIAN (Dominantly Inherited Alzheimer’s Network) research. Washington University in St. Louis is the lead research institution, but there are other sites in the U.S, the U.K., and Australia. The research does not require that participants find out their genetic status, but it provides a great forum for discussion of the issues. http://www.dian-info.org/
Early onset or younger age Alzheimer’s is a rare form of the disease. Not all causes of early onset Alzheimer’s are known, but our family carries an autosomal dominant gene mutation that causes it. In fact, there are three gene mutations in the world that cause the familial version of young onset Alzheimers. Our gene, PS2, sometimes called the Volga German Gene, is the rarest of the three. Each child of a parent who carries the mutation has a 50/50 chance of getting the disease. If someone is in line to inherit the gene, when should that person be tested to find out if they have it? Wait until symptoms appear, or before? It is a private question that must be answered by each individual in line for the gene.
A number of our family members are enrolled in the DIAN (Dominantly Inherited Alzheimer’s Network) research. Washington University in St. Louis is the lead research institution, but there are other sites in the U.S, the U.K., and Australia. The research does not require that participants find out their genetic status, but it provides a great forum for discussion of the issues. http://www.dian-info.org/
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