Thank you David

[Nikki J]

For starting this subforum!

I am not sure how many of us there are here now. For those who don't know me I am Nikki. My family is a FALS family and we are c9orf72 which is the most common cause of FALS. C9 causes ALS and FTD either alone or together. It also causes progressive supranuclear palsy (psp). My family has had all of the above right now my sister has ALS my aunt has psp my uncle has dementia. Als took my other aunt and FTD/ALS killed my mother.

I have the gene. No symptoms yet. Told my chances of c9 disease are 95%. I participate in every study I can find.

Antisense technology ( a way of blocking the damage of the bad gene) is being developed. We have hopes of a clinical trial next year for c9 and also for sod1. This is my great hope so that this nightmare will finally be over for my family!

Hope anyone else who is FALS will chime in!

Best
Nikki

 

[olly]

Thankyou for sharing with us nikki.
To have this disease take one family member is bad enough but more is just so dreadful.
It must be so hard for you knowing that your most likely to develop als.....but from your posts I can tell your very level headed and a strong women.
Hoping and praying they find that cure.

 

[Nikki J]

Thank you Ollie. I am lucky so far to have no symptoms and I am grateful for every day I can get out of bed dress eat etc etc. i am lucky too to be able to participate in research.

 

[Tx Daddy's Girl]

How dreadful. You are a hero though for being in a trial and helping others. Bless you and your family.

 

[Nikki J]

Thank you. Dreadful? You bet! Especially when you look at the children....
Hero? No. Real heroes are the PALS and the doctors and researchers. I am just fighting this like everyone else here. I just have a different weapon in my damaged DNA!