The MDS Foundation proudly partners with the following organizations
The MDS Foundation proudly partners with the following organizations
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.
Every gift helps patients, caregivers, and healthcare professionals access life-saving resources, support, and education. Together, we can make a difference. Even a small contribution can create a big impact. Thank you for your generosity.
One Voice Inspires, Many Voices Transform
Patient
I wanted to rejoice in the Lord and testify to the power of prayer, healing, and deliverance - and God directing my Doctors and path.
In August of 2019, I was diagnosed with Myelodysplastic Syndrome (MDS) and given 2-7 years to live with Supportive Care (blood transfusions, etc). The only known cure was a Stem Cell Transplant (bone marrow transplant) that required harsh chemo & radiation first. I was given a 40% chance of survival.
The cancer rapidly progressed and by August 2020 I was bed-ridden and receiving almost daily blood transfusions just to stay alive.
My wife Melissa and I asked people to join us in prayer for the best outcome but we also prepared ourselves for the worst: I updated my Will and Estate Plan and accelerated our downsizing plan by 5 years by donating most of our possessions, as we didn't have time to sell, including selling our Mt. Airy, Maryland USA home of 21 years. Amazingly, God sent us a multi- denominational ministry, the waterboyz.org, to finish the projects and prepare our home for the market.
I was weeks away from succumbing when a matching stem cell donor was found and I received my stem cell transplant in September 2020.
It wasn't an easy road, and I am still battling some GVHD issues of the mouth, throat, and eyes, but I am happy to report that 125 days post-transplant, I became cancer free with 100% donor cells, and in remission!
In September of 2025, I celebrated my 5 year MDS remission anniversary. MDS may have diminished my cardio but not my competitive athletic spirit.
3 years ago I learned how to play Bocce, an Italian ball game.
In June 2025, in 95° F heat, I organized a Bocce team that won gold in the Maryland Sr. Summer Olympics.
Conversely, in October, in the 42° F cold, I'm happy to report, I won gold in the Maryland Sr. Fall Olympics for both Bocce singles & doubles.
I retired in 2024 and my wife & I are focusing on improving our health & traveling more both locally & globally.
My MDS recovery has caused me to be more reflective & present while focusing more on what's important and trying to live a more fulfilling life.
-paul lenk
MDS SCT 2020
University of Maryland Hospital, Baltimore
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.
Discover genuine accounts from individuals navigating MDS. These stories reflect the real challenges and strengths within our community.
Patient
I have been diagnosed with MDS and am currently low-moderate risk.
Patient
My MDS Journey
Started in 2000 – when my family doctor noticed that my HGB was going down slightly during my yearly physical. After this occurred three years in a row, he referred me to a local Hemato…
Patient
For many years, I’ve struggled with fatigue, but I always chalked it up to being a busy mom with young children. It wasn’t until later that I realized this exhaustion was part of something much bigger…
