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Phone within the US
1-(800)-637-0839Outside the US only
1-609-298-1035Address
The MDS Foundation
228 Park Ave S
PMB 118983
New York
NY 10003-1502
The MDS Foundation is a global nonprofit 501(c)(3) advocacy organization (EIN 22-3283911), supporting patients, families, and healthcare providers in the fields of MDS and related diseases for over 30 years.
© 2024 MDS Foundation. All rights reserved.
One Voice Inspires, Many Voices Transform

Patient Advocate
Starting out, I thought I knew what I wanted and where I wanted to be. However, life has a way of shaping, or in my case, reshaping, your path as you walk it. From the time I was young, I felt called to help others, though it took time, and a few twists and turns, to discover the right path.
In 2001, I accepted a receptionist position at a medical education company whose President and CEO also served as the Operating Director of the MDS Foundation. What began as an entry-level role quickly opened my eyes to the healthcare industry, the importance of both patient and professional education, and—most importantly—the vital need to support patients living with MDS and their families.
Over time, my responsibilities grew to include assisting the Foundation with educational resources, meeting planning, and professional programs. As I became more involved, I began to truly understand the Foundation’s mission, the importance of our work, and the profound impact it has on patients, caregivers, families, and healthcare professionals. Today, as Director of Professional Education, I am honored to lead initiatives that support clinicians and researchers, ensuring they have the tools and knowledge to better care for their patients.
For the past 24 years, I’ve grown alongside the Foundation and witnessed firsthand how our efforts change lives. I’ve seen how a simple conversation with our staff can lift the spirits of a patient or caregiver, how our resources can empower someone to speak with their doctor, or how our support can help families navigate the most difficult times. These moments have shown me the true meaning of impact, and I am grateful for the journey that has brought me to this point, as well as the opportunity to continue making a difference in the years ahead.
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.

Patient
My name is Rebecca (Becky) Duncan and I am a myelodysplastic syndrome survivor.
The following is part of the report that was given to Dr. Cynthia Rutherford, from the lab, at 2:20pm on December 20, 20…
Patient
I now take 700mg quinine daily. Platelets dropping. At this dose, my plaelet count drops about 100 points a week [7 days]. I have to drop from 950 to 300. That'll take 6-7 weeks. Don't exceed the …
Patient
I am a 77 year old male ( almost 78) and was diagnosed with MDS with rings and a 5q variant. I had received a transfusion for a colon operation last August. The operation went well, and I recovered bu…
Your story matters. If you'd like to contribute your experience with MDS and inspire others in our community, we invite you to share. Your voice can make a meaningful impact and offer support to those on a similar journey.