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jlcarnahan

New member
Joined
Nov 20, 2013
Messages
2
Reason
CALS
Diagnosis
11/2013
Country
US
State
Fl
City
Avon Park
My husbands side of the family seems to have a very strong persistent gene. My husband is now the 8th person in his family to be diagnosed. I would love to connect with others who are familiar with SOD1 and/or FALS. My experience was with his father who passed 8 months after diagnosis at 53 (we believe he knew several months before going in), and my BIL who passed at 33 about 10 months after diagnosis. My husband is 41.
 
Hi. I am very sorry about your husband. You will find support here for the path you are on although there are not so many FALS people active on the boards. My family is c9 orf72 FALS. If you are on FB you might want to join the FALS group ( it is a closed group). There are lots of great people there and plenty with sod1. Are you looking into clinical tr ials? There are 2 that are specific to sod1.
 
I am from a SOD1 family and I have ALS.
 
I'm sorry about your husband. Our family just lost my brother last month. My father and his sister also died of ALS. A university confirmed using blood samples that my brother and dad had the SOD1 mutation. This means I and many others in our family have a 50/50 chance of having this mutated gene. As a memorial to my brother I have created a new website this month to detail what I am doing to stop the SOD1 gene from expressing itself during my lifetime. I have not been tested but I am assuming I have the gene. Please visit. The home page will explain why this website was created. I hope I can help SOD1 families by sharing my lifestyle strategy.
 
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The website in my original post should be "stopALSfromStarting". I just added pictures of all "my stuff" this morning. I am adding more content each week.
 
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Thank you. We know in or family it is not a matter of "if" but rather "when". We told our daughters (11 and 14) yesterday and that is the most difficult thing I have ever done. Just trying to keep one foot in front of another.
 
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