This is to supplment the review I wrote in 2010. Since I wrote that review, I am happy to report that the MDS Foundation has retired its debt, is solidly in the black and is on firm financial ground. It has expanded its scientific and patient advocacy programs and has been instrumental in fostering the creation of patient support groups globally. Among its many projects, it has taken the lead role in forming the International Working Group for Prognosis in MDS (IWG-PM) which has recently published the revised Internation Prognostic Scoring System (IPSS-R) along with a calculator to be used by physicians. The Foundation's "Building Blocks of Hope" project has produced a comprehensive and dynamic compendium of important information on the disease.
I am a patient with Myelodysplasia, a bone marrow disease that prevents the body from making adequate functioning red cells, white cells and platelets. I receive 2 units of red blood cell transfusions every 8-10 days. I have been a board member since 1999. The Foundation has enabled me to understand the disease and the various treatments and to stay in touch with other patients and monitor advances in the science. The disease is inevitably fatal, although it comes in lots of varieties. High risk patients will die within 3 months to 5 years. Low risk patients, like me, can live for many years on transfusions. I have had the disease for 12 and half years. The Foundation has pointed me in the right direction to get to the best experts. Founded in 1994, the MDS Foundation serves researchers, health care professionals and patients and family members by bringing them together for educational and support services. The MDS Foundation distinguishes itself because its board consists almost entirely of world reknown research physicians from many countries, rather than patients and family members. It has strong international connections. Traditionally, its programs have been scientifically oriented, rather than lobbying. It is patient oriented as well. It is also the only foundation focused soley on Myelodysplasia rather than several bone marrow failure diseases. The Foundation experienced financial problems during 2008 and 2009, and, as a result, a change in executive management occured in 2010. Under the guidance of its board of directors, the Foundation has reduced its debt and operating expenses and increased its revenue development efforts. It is expected that it will soon add lay members to its board to broaden its constituency. It has a staff of 5 employees. Sample programs include: -Conducts Patient Liaison Services through Phone and Email Hotline -Facilitates Patient Interaction on MDS Foundation Website Forum -Certifies 150 MDS Centers of Excellence Worldwide -Holds Patient Forums in Various Cities -Sponsors Nurses Forums to Keep Nurses Informed as to Treatment -Conducts Global Symposia to Keep Hematologist Up to Date -Makes Young Investigators Grants -Creating a Major MDS Database Available to All Researchers -Established International Working Groups on Scientific Issues -Establishing Global Patient Support Groups -Publishes Materials on Disease Issues and a Newsletter -Facilitates Accruals for Clinical Trials