Jennanne
Active member
- Joined
- Oct 25, 2016
- Messages
- 39
- Reason
- CALS
- Diagnosis
- 12/2016
- Country
- US
- State
- New York
- City
- Buffalo
Update:
We have finally connected with Jon's relatives with an ALS association. From what we understand they have either had ALS, familial frontotempral dementia or a combination of the two. The family members are being studied at the Mayo Clinic in Rochester, MN.
Last Monday I called the Mayo and spoke with the Coordinator who is in leading the LEFFTDS (longitudinal evaluation of familial frontotemporal dementia) study. She spoke with Dr. Bradley Boeve the lead PI and we were immediately accepted into the study. We head out to the Mayo in mid April. Even though this is an observational study, we felt it was worthwhile to enroll in. Anything that we can do to help with a cure is worth doing! Jon will also be able to receive genetic testing for free which our insurance company has denied.
My apologies, I know this post does not belong under the Sod1rx BIIB067 heading but I wasn't sure where to put it.
Jenn
We have finally connected with Jon's relatives with an ALS association. From what we understand they have either had ALS, familial frontotempral dementia or a combination of the two. The family members are being studied at the Mayo Clinic in Rochester, MN.
Last Monday I called the Mayo and spoke with the Coordinator who is in leading the LEFFTDS (longitudinal evaluation of familial frontotemporal dementia) study. She spoke with Dr. Bradley Boeve the lead PI and we were immediately accepted into the study. We head out to the Mayo in mid April. Even though this is an observational study, we felt it was worthwhile to enroll in. Anything that we can do to help with a cure is worth doing! Jon will also be able to receive genetic testing for free which our insurance company has denied.
My apologies, I know this post does not belong under the Sod1rx BIIB067 heading but I wasn't sure where to put it.
Jenn