About Wiskott-Aldrich Foundation
The Wiskott-Aldrich Foundation is a volunteer run, non-profit organization, dedicated to funding research to find improved cures for Wiskott-Aldrich Syndrome, and to support for families living with the disease around the world. We are a group of passionate individuals, each with our own area of expertise, with a common mission to help families and patients with WAS.
The Wiskott-Aldrich Foundation is a merger of two organizations: For Pete's Sake Foundation based in Georgia, whose focus was to provide support for families with WAS, and The Wiskott-Aldrich Foundation of North Carolina, focused on WAS research, education, and community support.
FOR PETE'S SAKE
For Pete's Sake Foundation, now operating as the Family Support Program of the foundation, began in 2002 as a personal crusade by friends and family of P.J. (Peter Jr.) Lyle who had Wiskott-Aldrich Syndrome. None of them had heard of the disease until it threatened to take the life of the young son of Peter and Beth Lyle. The Lyle's story is both inspiring and heartbreaking. Fortunately, P.J. is a happy and very active child today, having had a successful bone marrow transplant using marrow donated by his sister Savannah.
When the For Pete's Sake Foundation was founded, Wiskott-Aldrich Syndrome had no organized charitable support. The foundation's mission was to raise awareness in the medical community and to improve the quality of life for WAS patients and their families by providing them financial support. Media coverage of their story brought a torrent of contributions to the foundation and also caught the attention of WAS families who thought no one was out there to help.
Over the years, the foundation has helped save the lives of children with WAS from around the world, paying for the significant expenses that these families have to bear. The foundation now receives a steady stream of requests for support, both financial and emotional.
The Wiskott-Aldrich Foundation (North Carolina) first started as an Internet support group moderated by Sumathi Iyengar M.D., in January of 2009. Amalan Iyengar, Sumathi and Sridhar's son, was diagnosed in 1999 with WAS at one year old. Like most WAS parents, they were frustrated with the lack of information about how to manage Amalan. There were no support groups, leading Sumathi to extensively research the literature on WAS and to connect with leading WAS Researchers and Physicians from around the world. Many of these researchers are now members of the WAS Foundation Scientific Advisory Committee. This committee provides technical advice and guidance on the content of the website and directs the research focus of the foundation.
In September 2008, Sumathi saw the heartbreaking and compelling YouTube posting of Jeff, a young man with WAS. The video highlighted the delays in diagnosis, lack of information, and lack of a support group and inspired her to make a difference for WAS families. She started the WAS IDF discussion forum where a small but dedicated number of families shared their experiences. Bolstered by the support and energy on the forum and urged on by Sridhar, Sumathi worked with Rosalind Cardia, a licensed family therapist to create the informational site www.wiskott.org. The site was created in collaboration with leading WAS experts, Dr. Fabio Candotti of the National Institutes of health and Dr. Hans Ochs of Seattle Children's Hosptial, who dedicated their time and energy to make it a valuable resource for the community.
Robin Wenzel is mom to J.P. (James Patrick), who was diagnosed with WAS when he was 2.5 months old. He was born six weeks premature, and his low platelets were discovered in the ICU when he was two days old. It took almost three months for J.P. to be diagnosed with WAS, and since that heartbreaking day in January 2009, Robin worked diligently to become an informed advocate for her son's condition to ensure the best care possible. After many late nights researching WAS, Robin was introduced to the IDF WAS discussion forum by J.P.'s immunologist at UCSF. There, Robin met numerous families living with WAS, including Sumathi. The two became fast friends, and Robin helped Sumathi with insightful suggestions on how to improve wiskott.org. Todd Wenzel, J.P.' father, had been helping Sumathi with the legal aspects of the website. Knowing that much more needed to be accomplished to help families with this rare disorder, Robin and Todd Wenzel joined forces with Sumathi and Sridhar Iyengar to start the Wiskott-Aldrich Foundation in North Carolina in June 2010.
In July 2010, the first-ever Wiskott-Aldrich Syndrome Conference was organized by Dr. Fabio Candotti, Dr. Sumathi Iyengar, and Marcia Boyle of IDF. This conference brought together for the first time WAS patients, families, physicians, and researchers from around the world with a unified goal of finding a better cure and improving the quality of life through research, education, and family support. It is this goal that has brought together the two organizations that make up today's Wiskott-Aldrich Foundation.
We hope that you will join us in this important crusade for our families.
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