For Michael Skrynecki, winner of the first-ever Invest in Others Catalyst Award in 2014, helping others was never about recognition. “None of us are nominated for what we do, do it for the accolades,” said Michael. “Recognition was never the primary motivation for me.”
This comes as no surprise when considering the focus of Michael’s charitable work is Wiskott-Aldrich Syndrome (WAS), a rare, life threatening, primary immunodeficiency and bleeding disorder that impacts only 4 out of every 1,000,000 male births. As an orphan disease with little public awareness, resources for individuals and families afflicted with WAS are limited.
When Michael heard that the son of a long-time friend was diagnosed, he knew he had to act. He co-founded and serves as Chairman of the Wiskott-Aldrich Foundation (WAF), an entirely volunteer-run non-profit dedicated to funding research and supporting families stricken with WAS.
The community afflicted by WAS may be small, but Michael is more concerned with outcomes. “While we don’t serve large numbers of people in superficial manners, the impact we have on those we serve is very meaningful to them, and, in many cases, truly life-saving,” Michael explained.
In June 2015, WAF hosted the 3rd International IDF-WAS Conference in New Orleans, supported in part by the $20,000 award from Invest in Others. With 14 speakers and over 70 attendees, it was considered it a great success to the small community.
“For the first time ever, WAF had a Case Study session, where challenging cases were discussed and experts weighed in on the best treatment options. In addition to the experts, families shared their journey and best practices, providing first hand guidance for families struggling with the disease,” described Michael.
In addition to the conference, the organization supports research programs. Most recently, WAF saw the completion of a two-year project done in conjunction with the Primary Immune Deficiency Treatment Consortium (PIDTC). The results provided groundbreaking information on the cause of autoimmunity in WAS, which lead to better treatments.
Michael knows there is still a long way to go. “Starting an organization from the ground up is no easy task,” he said. “Realizing we are still just scraping the surface and have much, much more work to do is particularly daunting.” However, he commented, “receiving the Catalyst Award has helped me rededicate myself to helping families with children suffering with Wiskott-Aldrich Syndrome around the world.”
Looking forward, WAF is once again partnering with PIDTC on the first ever quality of life study for patients with WAS. Preliminary results will be presented at the Clinical Immunology Society in April. WAF is also focused on planning the 2nd WAS Research Symposium for September and the 4th International IDF-WAS Conference for June 2017.
Michael hopes others in the financial services industry will join him in his charitable efforts. “As someone who has always been heavily engaged in giving back, I find it particularly rewarding to help my colleagues as they enter their own philanthropic journeys,” he explained. “I am glad to serve as a role model and mentor to other individuals, advisors or otherwise, who share similar values and want to give back to an under-served community.”