Aplastic Anemia and MDS International Foundation
The Aplastic Anemia & MDS International Foundation is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world.
We are a patient-focused, patient-centered organization, serving patients and families throughout the three phases of bone marrow failure diseases:
- the life changing phase of diagnosis
- the life threatening phase of treatment
- the life long phase of living with a chronic disease
Jocelyn Boyer has been providing hope to other aplastic anemia patients with her story as a survivor. Thanks to supporters, aplastic anemia patients like Jocelyn have been able to access the resources she and her family need to balance care and quality of life.
Jocelyn was thriving in her senior year of college when she received her initial diagnosis. Her life was normal and predictable. She was working, volunteering, attending classes, until extreme fatigue set in, making it difficult to walk a single flight of stairs. She heard the word, “anemia,” from her doctor who referred her to an oncologist. Her bone marrow biopsy resulted in frightening terms like “leukemia” and “aplastic anemia,” and she was immediately admitted for blood transfusions.
A few weeks later she began immunosuppressive therapy with ATG, which she endured for 7 months. Jocelyn was permitted to complete her final semester through online learning, and she was able to graduate on time!
In 2014, Jocelyn received the unfortunate news that aplastic anemia had returned. As she repeated the immunosuppressive therapy, she was diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH). She started Soliris treatments two months later.
While on Soliris, Jocelyn was delighted to learn she was pregnant, and she delivered a healthy girl in 2016!
Jocelyn is sharing her story with patients and families to bring encouragement and hope. “You can still have an enjoyable and productive life. She is thankful for her team of oncology nurses who encouraged her through each phase of diagnosis and treatment. They even gave her a baby shower!
Jocelyn also reminds patients to keep a bright mindset. Don’t take the days for granted, and rely on your personal support and your medical support. “You have to believe that it’s going to be okay! Keep going, share your story, and know that you aren’t alone!”.
You can offer patients like Jocelyn the Answers, Support, and Hope they need by choosing to invest in the programs that serve patients and their families.
Financials
Programs
Patient and Family Conferences
Conferences provided free of charge to bone marrow failure disease patients and their families and caregivers. Patient can expect to gain unprecedented access to top experts, get unique questions answered, return home better-equipped to self-advocate for their health, and meet those who genuinely understand what you are going through. We serve to build a strong and supportive community that provides as a sense of optimism and hope for the future.
Health Professional Conferences
AAMDSIF sponsors live education events throughout the year. This includes satellite symposia at annual medical association meetings, as well as smaller live regional events where community-based health professionals can hear from leading experts.
Volunteering + Events
March for Marrow
Looking for a way to help? Attend or organize a March for Marrow near you!
These fundraising events provide an uplifting and exciting way to spread awareness about bone marrow failure diseases. Patients, families, friends, colleagues, neighbors all participate and we’d love you to join us. We’re ready to assist anyone who wants to plan an event like this. To learn more, contact Julie Lowe, [email protected], 301-279-7202 x103.