Old 11-13-2016, 05:07 AM #1
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Default Resources for genetic testing

Hello all,
My name is Josh. And there's familial a lesson my family. My mom is diagnosed with it. My grandmother died from it. My great grandfather died from it. And my great great grandfather died from it though on his birth certificate it says creeping paralysis. My mom also has a cousin that recently died from it. My mother had genetic testing performed with the help of the ALS foundation and they covered the general tasks such as SOD1, c9orf72, FUS, and a handful of others. All of them were negative. She is wanting to get tested for the new NEK1 or perhaps have a whole gene mapping done to see if we can identify what is causing this in our family.of course she is now on Medicare and disability and cannot afford these test to be done and they will not be approved by Medicare.my siblings and I are trying to figure out if we could get the money together to attempt to pay for that on our own but I thought I would check with this group to see if anyone knew of resources available to us. Thank you for your time.
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Old 11-13-2016, 06:01 AM #2
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Default Re: Resources for genetic testing

I would contact the Siddiques at Northwestern. They study fALS and have discovered several of the now known defects. They also keep samples and will test as new defects are discovered and notify the patient or surviving family. The exome/ genome tests are unlikely to yield answers so don't worry about funding that. Not everything shows on those- c9 does not for example
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Old 11-13-2016, 12:31 PM #3
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Default Re: Resources for genetic testing

NikkiJ thank you
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