Comments on: Ending Disease Before Conception

By: Rebecca

Rebecca — Mon, 10 Mar 2008 18:12:36 +0000

For anyone else like myself and Morgan who are doing projects or papers on TSD, you should check out YGYH.org if you have not already. It provided an excellent detailed explaination of the hexa protien defects and how the gm2 gangliosides accumulate in the lysosomes of the neurons of the cns…later!

By: Morgan

Morgan — Thu, 31 Jan 2008 16:43:32 +0000

Thank you This was very useful. im doing a project on tay-sachs and this really help the most out of all the websites ive been too…thanks

By: Jeff

Jeff — Sat, 07 Jul 2007 20:56:46 +0000

Harry Ostrer does not believe that embryos have souls, a belief held by many. But if they do, is abortion for lifestyle and research contributing to a global holocaust that dwarfs the horrors of Nazi Germany? Until proof exists, I will stay well on the safe side and assume the spiritual and physical are joined at conception.

By: Darius

Darius — Thu, 18 Jan 2007 09:06:59 +0000

i agree too

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By: Jayne Gershkowitz

Jayne Gershkowitz — Tue, 16 Jan 2007 01:16:03 +0000

I agree with Ms. Crawford’s comments and think it is important to add that the increasing occurrence of Tay-Sachs disease among people who are not of Ashkenazi heritage is completely missing from this article. Persons of other ethnic ancetry, including French-Canadian and Cajun maintain the same Tay-Sachs carrier risk as Ashkenazi Jews, and those of British Isles descent have a higher carrier rate than the general population. One in 250 of the general population is a carrier. It seems that whenever Dr. Ostrer discusses Tay-Sachs, its occurrence and risks, he always limits his comments to the disease within the Jewish community. While that may be his realm of experience, Tay-Sachs, like most other lysosomal storage disorders, is pan-ethnic – knowing no geographic, religious, or socieconomic boundaries – and is devastating genetic disease equalizer. Anyone can be a carrier of Tay-Sachs. What does that say for specific population screening? Until that message gets out, only part of the story is being told, and a public health disservice is being done.

Jayne Gershkowitz
Board of Directors
National Tay-Sachs & Allied Diseases Association

By: Kim Crawford

Kim Crawford — Thu, 11 Jan 2007 18:53:50 +0000

Dear Mr. Leach,
I would like to point out a few inaccuracies in this article. First, there are at least 12-15 new Tay-Sachs cases per year in the US. Second, carrier couples have more options that simply do not have children or abortion: Pre-implantation Genetic Diagnosis (PGD) combines the technology of in-vitro fertilization with genetic screening so only healthy embryos are inserted in the womb, assistive reproduction and adoption. Third, preliminary data suggests that certain Gaucher mutations are associated with an increased risk of developing Parkinson’s Disease but additional studies must be done before a direct correlations can be determined.

Please feel free to contact me offline to discuss this further.

Thank you,
Kim Crawford
Director of Member Services