FALS

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RoseFish

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Jan 24, 2021
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Reason
Learn about ALS
Diagnosis
02/2021
Country
CA
Hi : My mother had ALS and now discovered that my brother was diagnosed with FALS. We are not sure of the gene yet as results are still pending. I am a sibling to my brother and it is my understanding that I have a 50 percent chance of inheriting the gene. Is there any known supplements that I could take that could potentially delay the onset of ALS?

Additionally, once we get the gene results and I test positive for the gene, are there any pre-symptomatic trials presently open in Canada. Also, can you participate in a pre-symptomatic trial if you don't want predictive testing?

Thanks for taking the time to read this.
 
I am sorry your family is touched by this. You are correct that you would have a 50 percent chance of inheriting a mutation.

a few points. If there is zero other family history it is possible that this is not true FALS. The chance of a child of someone with ALS getting ALS too when there is no autosomal dominant mutation is about 1 in 100 lifetime. The younger the onset ages the less likely this is

around 2/3 of what is clearly FALS with multiple relatives affected have identifiable genetic mutations for FALS. 1/3 do not.

I am not aware of any studies in Canada right now. If it is C9orf72 you would be eligible for genfi which is an FTD study. It will be starting a new phase later this year probably. Genfi does not tell you your genetic status though if know you are positive you can join.

Miami in the US accepts Canadians. You need to know a family mutation but you can choose not to know your status. They pay travel. They have a waiting list

columbia in NY is the same and may no longer have a nondisclosure arm but they don’t pay travel

DIALS ( Boston and St Louis) will accept people in the 1/3 no identified mutation, they will test but you can also chose not to know.

in all case of non disclosure the study personnel you see do not know your status either.

supplement if you are a carrier? There is no research yet to back up prevention. However theracurmin hp, TUDCA and vitamin E have been recommended to carriers I know. Vitamin e because of its risks is very controversial
 
Thanks Nikki for all your information. I just spoke with Miami coordinator but she advised that I really need to confirm the gene so that she can move forward with information.

Do you recommend any brands for Theracurmin HP ??- I did find Integrative Therapeutics on the net. Of course, I will speak to my family doctor before commencing any supplements.

Thanks again for all your information.
 
Yes that is what I said for Miami and Columbia as well. Only dials doesn’t require a known gene
that theracurmin is the one my clinic recommends

good luck
 
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