The PNH Research and Support Foundation
PO Box 10983
Rockville, MD 20849
ph: 888-582-9993
fax: 888-582-9993
info
About the Foundation
The PNH Research and Support Foundation is an AA&MDS International Foundation Patient Partner Organization.
We are managed by volunteers who are dedicated to serving the PNH patient community:
Tamir Orbach - President
Tamir is formerly the Vice President of the Board of the Aplastic Anemia & MDS International Foundation. His full time job is selling Enterprise Search Services at Portal Solutions. Tamir formerly worked at Microsoft for 9 years. Prior to that, he was CTO, an officer and on the board of thinkXML, a VC funded startup that was founded in 1998 and was acquired by Zions Bank in 2001. Tamir was diagnosed with PNH in April 2004, and had a pure blood stem cell (bone marrow) transplant to cure him of PNH in July 2004. He has since been actively involved in fund raising activities for the PNH Research and Support Foundation, the AA&MDS International Foundation and the National Marrow Donor Program (www.bethematch.org).
Judith Irvin - Vice President
Judy administers several community development services programs for the City of Salina, Kansas, including housing rehabilitation and municipal code enforcement. She has a B.A. in Education and participates in the work of several non-profit boards engaged in education and quality of life issues. Judy was diagnosed with PNH/AA in 2006, has attended NORD regional patient conferences and is active with the PNH Support Group.
Melanie Marquez - Secretary
Melanie has been a legal secretary in the field of family law for several years. She has a B.A. in Criminal Justice and has served in the Illinois Army National Guard. Melanie was diagnosed with PNH in 1990 and is an active member of the PNH Support Group (www.pnhdisease.org) and now the PNH Research and Support Foundation.
Dr. Shariq Ali - Board Member
Shariq currently works for Genzyme Corporation, where he leads the global medical affairs for cardiovascular therapeutic area. In his earlier career days, he worked at Alexion Pharmaceuticals where, as part of the medical affairs team, he helped to launch Soliris for PNH. It is at Alexion where he got involved with the PNH Foundation and worked closely with founder Sara Higgins to organize the first ever PNH walk in NYC. Shariq has held positions of increasing leadership at various academic institutions in the NY area. His most recent position being department chair at Touro College of Pharmacy in Harlem, prior to joining Genzyme.
OUR MEDICAL BOARD:
David, a graduate of Harvard Medical School, is an assistant professor of hematology at NYU School of Medicine as well as a member of NYU Hematology Associates. As one of the top PNH specialists in the country, he has vast clinical and research experience with PNH and is currently on the scientific advisory board of the PNH Registry. He has presented at several patient conferences on PNH and is very dedicated to his patients.
Dr. Wendell Rosse - Professor of Medicine Emeritus, Duke University
Contact Us
(888) 582-9993 and leave a voice mail, or email us at info@pnhfoundation.org
Copyright 2010 PNH Research and Support Foundation. All rights reserved.
PO Box 10983
Rockville, MD 20849
ph: 888-582-9993
fax: 888-582-9993
info
