My Nonprofit Reviews

When my husband received his diagnosis 7 months ago, our neurologist told us to look into this organization. The person on the help line was very informative and sensitive. The info on the website about symptoms and progression is very helpful. We often print info from the website to give to specialists.

I had the privilege to attend the annual conference in Orlando. Meeting other spouses who are on the same journey was amazing! The speakers were so knowledgeable, and I learned so much. I hope to attend again to learn more, and make more personal connections.

The coalition supports research, which is the only way a cure will ever be found for this awful disease. They also administer a private Facebook group. While the posts are often difficult to read, the group is a great place to ask questions and get information. It’s great to regularly connect with others dealing with the same types of of issues that we are. Without the support of this organization, I would be lost.