Samantha’s Something

“Samantha’s-Something” has a simple, yet pivotal message, especially for local children: “Everybody is Different—and that’s OK.” APS-1 is an ultra-rare, autoimmune, genetic condition that affects only 1 in every 2-3 million people in the country—and only 1 person in our community–9 year old Samantha Finch. By most appearances, Samantha is a “normal” child in her third year of AYBA basketball and a strong student at Willow Elementary. What her classmates and teammates notice more, unfortunately, is that she has lost her hair (alopecia areata); she has yellowing teeth; and her stamina is terrible because she has Addison’s Disease as part of APS-1. Remarkably, however, she rarely complains about “being different.” So, why is our local charity supporting an ultra-rare condition affecting just one local girl worth your support? Because raising awareness for one rare disease raises awareness for all rare diseases, which affect 1 in 10 Americans. Last year, we raised close to $75,000 and helped fund a $100,000 research grant awarded by the National Organization for Rare Disorders (NORD). This year, “Samantha’s Something” is hosting its second event at Agoura High in May. With your support, we will make a measurable difference for all children suffering from rare diseases.