The Wiskott-Aldrich Foundation
“There are so many unknowns when you have an orphan disease,” said Mike Skrynecki, a financial adviser with Morgan Stanley in Atlanta. He is the founder and chairman of the Wiskott-Aldrich Foundation, a nonprofit dedicated to supporting families of children with Wiskott-Aldrich Syndrome, a rare immunodeficiency disease that affects one in 250,000 males. He founded the organization after the son of a long-time friend was diagnosed with the disease.
The organization has grown quickly, thanks to Mr. Skrynecki’s strategic vision and professional background. A certified fund-raising executive, he spent 15 years working in the nonprofit field.
In 2010, the Wiskott-Aldrich Foundation, which had primarily been focused on helping families, was transformed by a strategic merger with another WAS organization focused on scientific research. The combination created a bridge between patients and the global scientific community.
Since its establishment in 2002, the foundation has launched the first-ever WAS research projects, organized two WAS family and researchers conferences, created an information and resource website used by several thousand families and physicians world-wide, published the first WAS family and patient guide, and provided over $1 million in direct and indirect assistance to families.
“Even more important than the money we give to families is the emotional support, the answers and the family support network we provide. We’ve been the only support for these families — we’re their lifeboat.”