"My family has been participating in the ALS Walk since 2013. My aunt formed the team to honor my grandmother, Adeline, who was diagnosed with ALS when she was 51.  Adeline was a beautiful woman with a gorgeous heart. As a mother of 9, she loved spending time with her family and filling the table with food. Most of all, Adeline loved to see everyone happy and together. It was a blessing she was my grandmother.

 

 

 

ALS dates back as far as I can see on our family tree. My grandmother Adeline lost 4 of her siblings to this horrendous disease and a nephew last year. In December 2021, my father was diagnosed with ALS. The urgency for defeating ALS was always there, but it personally intensified dramatically. I spent a lot of time with my grandma during the years she suffered with ALS, and the thought of my father going through what she went through made me sick.

 

My father completed genetic testing. After his results came back, that was the first time I heard of familial ALS. So, I scheduled a gene counseling appointment with Dr. Simmons from Penn State Health and ordered my gene test. Unfortunately, after a long month, it came back positive. When Dr. Simmons told me that our gene was very rare and there were only a couple dozen known families with the gene, I knew I had to get involved to find a cure.

 

 

Our slogan for this year's Ocean City Walk is: In this family, no one fights alone. This slogan represents our entire O’Sullivan family is banding together – with all the ALS families."