I'm to running to raise funds and awareness for orphan genetic diseases, which are rare diseases that afflict 200,000 or fewer people. Unfortunately, rare diseases aren't so rare in my family. My younger sister, Hennie, and I have Sitosterolemia, which is what caused my heart attack in February 2022. My first cousins, Jack and Natalie Stevenson, have Ataxia-telangiectasia (A-T) (see paragraph below). Hennie, Jack, and Natalie courageously face their respective diagnoses head-on. They are my inspiration. #NoCureNoQuit

Join me in my efforts to raise money to find a cure for A-T and #bethehope. A-T is a genetic disease that causes loss of muscle control and balance, cancer, lung disease, and immune system problems in children and young adults. The nonprofit A-T Children’s Project partners with academic and industry investigators worldwide – organizing and supporting innovative research, conferences, clinical teams, data platforms and biomarkers – to optimize disease management strategies, develop new treatments and find a cure.