The PNH Research & Support Foundation (PNHF) is dedicated to funding research to find a cure and new treatments for paroxysmal nocturnal hemoglobinuria (PNH) and to helping PNH patients in need with limited funding for disease-related expenses not covered by insurance.
PNHF is a strategic partner with the Aplastic Anemia & MDS International Foundation (AA&MDSIF). The partnership allows the PNHF to more actively and effectively carry out its mission to raise money for research on PNH, as well as to provide financial support to families who need to travel for PNH related medical needs. This partnership leverages the work of both groups and enhances AA&MDSIF’s ability to offer its full range of patient education and support services more directly to PNH patients and families. AA&MDSIF has been consistently expanding its services to PNH patients through its regional conferences, webinars, educational materials, Support Connection, and Communities of Hope support groups.
The Patient Committee provides support to patients and their families, processes grant requests, and helps with fundraising events. Members are:
- Melanie Marquez (Chair)
- Jamie Lam (Treasurer)
- Heather Rumery (Secretary)
- Joe Ellenberger
- Amanda Foisy
- Judy Paulette
- Erin Schmidt
The strategic alliance grows out of a common patient-centered approach. AA&MDSIF has more than 30 years of service as a recognized and respected leader in patient education, health professional education, advocacy and research. It is supported through individual contributions from grateful patients, families and friends, as well as foundations and corporations.
Founded in 2004 by a young PNH patient, Sara Higgins Raboin, and her father David, volunteers with the PNHF have a remarkable history of contributing to the patient community via an online peer patient support site, strong educational alliances with physicians specializing in PNH treatment and research, and significant yearly fundraising. From 2004 to 2009, the PNHF operated entirely with volunteers. In 2009, the PNHF contracted with AA&MDSIF to furnish research management, accounting, donor acknowledgement, and related services to the PNH Foundation. In late 2011, discussions began on each Board of Directors regarding a closer alliance, based on common interests and vision.
Today, scientific advances have refined understanding of aplastic anemia, myelodysplastic syndromes (MDS), PNH and several other related disorders. It has become useful to think of these disorders as a group, now generally referred to as bone marrow failure diseases, both for advancing research that may be helpful beyond one diagnosis and for the practical application to patient welfare as some may move from one diagnosis to another.