What does a person afflicted with ALS do to make a difference? In the past prior to my diagnosis, I was able to participate in church, school, and local community service opportunities. However, my life is different today, making it impossible to participate in those activities as I once did. But my heart still strives to help my new community - those living with ALS and their families. The answer is ALS Advocacy where I, and local Northern Ohio ALS Association staff, participated in virtual meetings with our U.S. Congressional representatives.

Each year the ALS Association meets with members of Congress as they ask for their support in new and increased federal investments in ALS research that will lead to more clinical trials to help find effective treatments, prevent new cases, and ultimately find a cure. On March 17th, we met with staff from the offices of Senator Sherrod Brown, Representatives Marcy Kaptur, Tim Ryan, Dave Joyce, Anthony Gonzalez, and Bob Gibbs. These conversations focused on several important funding requests such as the ALS National Registry and Biorepository which can help identify risk factors, the National Institutes of Health funding for ALS clinical trials, The Department of Defense ALS research program, the Food and Drug Administration Orphan Products Grants to increase the number of clinical trials, and developing a plan to study ending ALS by the National Academies of Science, Engineering, and Medicine.

But most importantly, I was given the opportunity to share my story, your story, the story of ALS and its impact upon careers, finances, families, and our daily life. We all have hope. Hope for a treatment that will give us more days or better days. Hope for a cure. In my lifetime? Maybe not, but more importantly in someone’s lifetime.