interesting

[MaxEidswick]

interesting ...

.
Jen Eidswick‎Max L. Eidswick
19 hrs ·
Looks interesting. smile emoticon
Study uncovers key differences among ALS patients | Neuroscientist News

 

[Atsugi]

Excellent news. Thanks, Max.

 

[Nikki J]

Clear evidence that as has been said many times ALS is many different diseases. Mayo Jax has been doing a lot of good work on C9. I believe Krissy donated herself there Mike? Thank you. Ultimately she is still helping to save lives

 

[nebrhahe53]

As I thought too. There wont be one cure all drug. It will be like cancer. Different drugs depending on the genetic makeup.
Until gene therapy matures, there probably wont be a cure, at least for SALS. For FALS maybe sooner since they already know the genes responsible.

 

[Atsugi]

I believe Krissy donated herself there Mike? Thank you. Ultimately she is still helping to save lives

Yes, we donated her brain and brainstem to Mayo. I recommend all PALS donate. It's easy. We signed up, then when death occurred, we called the donation hotline and the funeral home. The funeral home picked her up and the donation people took it from there.

If anyone is worried, don't be. We had an open casket funeral and it was just fine.

 

[chally]

hey mike any more info on donate brain, sounds like it could be a helpful gesture, i am interested. thanks chally

 

[MaxEidswick]

>hey mike any more info on donate brain, sounds like it could be a helpful gesture, i am interested

me 2

 

[Nikki J]

Ask your clinic or see my post in research subforum on VA brain bank. They have a study for ALS vets as well as gulf vets ( if you are both can do both) and any CALS vets there is a need for healthy controls

 

[hjlindley]

I saw that post, and found it very curious. I am the first in my family to have the C9ORF72 gene. My brain and spinal cord are going to the Mass General. The first step was to call and register as a patient. I did that and they pulled up my address from 1975. That means they took my paper charge and put it in a searchable format. Some are another I think they do a better job than the CDC on the registry.
Hollister