Melissa L Armstrong

Aug 10, 2024

We had no idea the C9orf72 familial gene was even in our family until my older sister got drop foot then a nerve conduction test. We had no idea the C9orf72 familial gene was even in our family until my older sister got drop foot then a nerve conduction test. We...

Tammy Allred

Aug 10, 2024

At 25 years old, she was outgoing, funny, a ray-of-sunshine personality. Kylie was the baby of our family. At 25 years old, she was outgoing, funny, a ray-of-sunshine personality; I’ve looked, and I can’t find a picture of her not smiling. One of her biggest concerns...

Andrea Allen

Aug 10, 2024

Tianna passed away on April 5, 2015, at the age of 27. It was June 2014 when my daughter lost her voice. In March 2015 my daughter Tianna was diagnosed with a severe form of ALS caused FUS gene mutations. The doctor initially told us that she had 6 months to live....

Robert Bradford

Aug 10, 2024

I won’t live to see the benefits that will come about from this research, but others will. Others like my children and grandchildren. My name is Robert P. Bradford. I am 68 years old. I served in the Navy during the Vietnam Era on the USS Worden as a hull...

Gustiandari Fidhya Permanik

Aug 10, 2024

I really want the best treatment that may improve his ability and slow the progression of the disease. Firstly my dad complained of weakness and pain of the right arm since 10 months ago, at the beginning the doctors suspected carpal tunnel syndrome, and he was...