Online Press Kit

AA&MDSIF overview

AA&MDSIF was founded in 1983.
AA&MDSIF is a charitable non-profit organization described under the Internal Revenue Code, Section 501 (c) (3), voluntarily audited on an annual basis.
AA&MDSIF is proud to spend only 9.6% on fundraising and administrative expenses, and is dedicated to maintaining this low annual percentage in order to allow maximum resources for patient information and research.
AA&MDSIF is a life-saving resource for thousands of patients and their families, providing vital services such as medical disease information, up-to-date treatment options, personal and instant answers to medical questions, access to medical experts, and clinical trials resources.
AA&MDSIF also provides emotional support for families and caregivers, connections to other patients and their families, advocacy in policy arenas, and funding for important medical research to find treatment and cures.

AA&MDSIF mission statement

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is an independent nonprofit organization whose mission is to support patients, families, and caregivers coping with Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases.

The Foundation:

� Provides educational materials, medical information, and access to peer support via a global network of volunteers who offer hope to those struggling with bone marrow failure diseases

� Builds awareness and knowledge of bone marrow failure diseases among medical and healthcare professionals and the general public

� Raises public and private support for research to improve patient treatments, restore patients to health, and ultimately, to find cures for bone marrow failure diseases

The Foundation�s ongoing commitment and dedication to this mission is based on the organization�s core values of fairness, integrity, transparency, respect, and responsibility.

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Facts about bone marrow disease

Every 17 minutes, someone in the United States is diagnosed with a bone marrow disease. Yet when someone is stricken, it is likely that they have never even heard of their disease. Because these are such rare diseases, it is vital that patients receive up-to-date medical information, expert treatment, and emotional support.
Bone marrow diseases occur when the bone marrow stops making enough healthy blood-forming stem cells.
In most cases, the cause is unknown and the term "idiopathic" is used. Sometimes the cause can be a rare response to radiation, chemicals, diseases, medications, toxins, and pregnancy.
Aplastic anemia occurs when the bone marrow stops making enough stem cells which reduces the number of platelets, red and white blood cells. This disease can be classified as moderate (MAA), severe (SAA), or very severe (VSAA).
Myelodysplastic syndromes (MDS) occurs when the bone arrow produces defective stem cells, which is turn produces defective blood cells, Lowered blood counts occur in one or all three types of blood cells. There are eight different types of MDS.
Paroxysmal nocturnal hemoglobinuria (PNH) occurs when defective stem cells create blood cells that have a defective protective layer. When the protective layer around the cells deteriorates and the cells are destroyed, the body rids itself of these cells in the urine. Usually the first urine after sleep shows the red color of these cells. PNH can occur with aplastic anemia or MDS, but may occur alone.
Patients vary in their response to low blood counts. The counts become problematic when symptoms appear. These symptoms especially in mild forms are not uncommon and do not necessarily bone marrow disease is present. It is important that anyone experiencing these symptoms consult their doctor.
When red cell count is low, symptoms include anemia, exhaustion, weakness, excessive sleeping, palpitations, and headaches
When white blood cell count is low, symptoms include mouth ulcers, fevers and infections
When platelets are low, symptoms include spontaneous bruising, nosebleeds, excessive menstrual bleeding, and gum bleeding.
Celebrities stricken with bone marrow disease: the physical chemist and Nobel Prize recipient Madame Curie and former First Lady Eleanor Roosevelt succumbed to aplastic anemia. Carl Sagan, astronomer and science writer; Senator Paul Tsongas of Massachusetts, Congressman Joe Moakley of Massachusetts, and Congressman Robert Matsui of California died of myelodysplastic syndromes as did Susan Sontag.