Having a baby that is affected with Tay-Sachs disease can be a very stressful time for a family and there are various organizations, agencies, and support groups available to aid in answering any questions or concerns. There are also some treatment facilities that are on the cutting edge of science and medicine that may be able to help your child or yourself if you have been diagnosed with Late-Onset Tay-Sachs disease.
There are some very good resources out there that are available to use when searching for information on how this disease works and the history of it. One site with such information is National Tay-Sachs and Allied Diseases which can be viewed at www.tay-sachs.org This website has a good overview of how this disease works in the body and how one goes about getting their child tested. Another place that may be of some helpful information is the Center for the Study and Treatment of Jewish Genetic Diseases. Their website is http://www.mazornet.com/genetics/tay-sachs.htm#Resources This site has many statistics on the history of Tay-Sachs, especially in the Jewish populations since this group tends to be at a much higher risk of being affected with Tay-Sachs disease.
If you want to get involved in helping find a cure for this disease, there are many organizations and foundations out there that are currently raising money to help fund research studies and provide grants for specialized projects in gene therapy and other forms of treatment. One website that seems to be on the front lines of these efforts is the Cure Tay-Sachs Foundation. There website is http://www.curetay-sachs.org/ Since their beginnings in 2007, they have managed to raise over 2 million dollars and have funded various research studies and have plans for more later on this year.
Some other foundations and websites that are raising money and connecting those who are parents of children with Tay-Sachs disease with other parents and doctors that may be of some assistance are Madison’s Foundation (http://www.madisonsfoundation.org/) , MUMS National Parent-to-Parent Network (http://www.netnet.net/mums/) , March of Dimes (www.marchofdimes.com) and NORD: National Organization of Rare Disorders (http://www.rarediseases.org/) .
There are treatment facilities out there that are working to help treat Tay-Sachs disease. Though there is no known cure for this disorder at this time, these facilities provide some services that may make patients more comfortable. The Mayo Clinic in Florida is a top-notch facility that may be able to help. Some other treatment facilities include, but are not limited to: the World Health Organization, Duke University Hospital, the National Institute of Neurological Disorders and Stroke, Johns Hopkins Hospital, and some other major university hospitals.
If there are any foundations, organizations, or agencies that are helping in the fight against Tay-Sachs disease, please feel free to comment on this blog post and give the name and website of the organization so that other viewers can have even more resources.
Note: RateADrug.com and I are in no way associated with the above mentioned websites, organizations, agencies, foundations, and the like. This is just a few resources that can be used if viewers have more questions that have not been discussed in my previous blog posts.
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