Founded in 1983 by patients, families and doctors, the AAMDSIF has grown into an international organization. For over 25 years, their services have been critically important to hundreds of thousands of people who have been devastated by bone marrow diseases.
The foundation's important work includes make information available to newly-diagnosed patients, which is an amazing service. Many people, including my parents and I, have never heard of these diseases until they are diagnosed. Having information ready allays fears, and provides a sense of control and hope.
They also create disease information to give to the school nurses and teachers of patients. Thanks to these booklets, my teachers had the necessary information to make sure I was safe at school throughout my childhood.
In addition, they give money to fund research studies which have contributed to many breakthroughs, including three new drugs to treat MDS that have vastly improved survival rates. This is especially important because bone marrow failure syndromes are extremely rare, and there are very few other organizations providing this money.
The foundation also compiles patient information to create statistical studies, because hospitals do not keep national records of bone marrow diseases. This provides researchers with critical information that is not compiled by anyone else.
Each year, the foundation holds an annual patient conference near Washington, D.C. This includes seminars on different diseases, and the latest treatments. This year, they hosted a Capitol Hill Advocacy Day in which patients met with their members of Congress and advocate in support of bone marrow failure issues.
The foundation needs your support to continue this vital work. To make a donation to AAMDSIF, visit their website at www.aplastic.org.