Stephanie lost her son to aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… when he was in his late 20’s and has been dedicated to raising funds and awareness for the Foundation and its research programs ever since.
The Research and Education Council is a new initiative dedicated to increasing research and public education for bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… disease.
The Council is comprised of individuals – patients, parents, spouses, children, family members and friends - who have been touched by bone marrow failure disease and want to ensure that these diseases are no longer life-threatening for future generations.
Our goal is to raise funds for research, education and awareness so that there is public recognition and understanding for bone marrow failure diseases. Ultimately we want more research dollars and more investigators to dedicate their studies around understanding our bone marrow bone marrow: The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow. .
AAMDSIF recognizes that MORE public recognition leads to MORE research and this translates into patients feeling better and living longer.
The Council raises funds for public education and annual research grants for all of the major bone marrow diseases with the AAMDSIF Medical Advisory Board reviewing, selecting and awarding topics based on the following criteria:
- Understanding etiology etiology: The cause or origin of a disease. and pathogenesis;
- Improving symptom management and the quality of life;
- Discovering new treatments; and understanding and preventing complications of bone marrow failure conditions (e.g., blood clotting/thrombosis in PNH, iron overload iron overload: A condition that occurs when too much iron accumulates in the body. Bone marrow failure disease patients who need regular red blood cell transfusions are at risk for iron overload. Organ damage can occur if iron overload is not treated. in MDS, etc).
Members support the Council with personal gifts and contributions or help raise funds for by opening doors, writing endorsements, making introductions to advance our shared goal and recruiting others to join in our collective fight.
Research Council membership benefits include:
- Regular research updates with AAMDSIF leadership or current researchers
- Opportunity to learn and hear the current research from top experts
- Opportunity to make a lasting and memorable difference for a loved one and for the community by eradicating bone marrow failure disease
- Opportunity to serve as a champion for healthy bone marrow
For more information and learn about participating, please contact Julie Lowe at (301) 279-7202 x103 or at lowe@aamds.org.