Kaden's Fight Against SAMD 9L Syndrome

04/22/2026

Today is World AML Awareness Day!
AML, or Acute Myeloid Leukemia, is a serious but rare disease. How does AML develop? What are possible treatments?
Today, we are hosting and recording a new webinar about Secondary AML, at 3pm Eastern Time US. Register here: https://www.aamds.org/webinar/secondary-aml
In about a week, the Recording will be with the list of all sessions and webinars: https://www.aamds.org/education/patient-family-webinars

04/16/2026

I got some great news at my hematologist appointment today. For the first time in two years my white cell count was in the normal range! My red cells were also in the normal range. But most importantly my platelets doubled in count since my last cbc!

04/07/2026

On World Health Day, we’re reminded that knowledge, access to care, and community support can make a powerful difference in every health journey. 💙

For those living with myelodysplastic syndromes (MDS), The MDS Foundation is committed to providing trusted resources, education, and support to help patients and caregivers navigate the path ahead with confidence. Together, we continue to raise awareness, empower our community, and work toward better outcomes for everyone affected by MDS.

Learn more on our website: https://www.mds-foundation.org/

03/31/2026

Patients with rare diseases like Aplastic Anemia, MDS, and PNH rely on their specialists. Many have saved their patients' lives.
You can make a donation in honor of these doctor(s) with a gift to AAMDSIF at aamds.org/donate

03/31/2026

It’s National Doctors Day and I can not express how thankful I am for all my doctors who have helped me in my fight! Dr. Hanzlik is my neurologist at St. Jude Children's Research Hospital 🎉👏

On National Doctors’ Day, we recognize the physicians who advance patient care while pushing science forward. Emily Hanzlik, MD, is an assistant member in the Departments of Oncology and Pediatric Medicine at St. Jude and an integral member of the brain tumor medical team.

Her clinical and research focus in pediatric neuro-oncology is closely connected to the long-term neurologic complications that children can experience during and after cancer treatment.

“We use clinical data to try to predict which patients may have a more strenuous treatment course and develop early interventions to improve their neurological outcomes,” said Hanzlik.

Her work also reflects the importance of individualized care, accounting for differences such as a patient’s age andtumor location as well as complications such as seizures that may affect quality of life in distinct ways. She collaborates closely with specialists across disciplines to adjust treatment and follow-up care with the goal of improving outcomes.

Hanzlik, who was named the St. Jude Outstanding Physician in 2025, is one of many doctors who provide exceptional care to our patients every day. Thank you to St. Jude doctors for all that you do.

03/25/2026

His valiant and painful battles can no longer hurt him . . .

03/18/2026

Hey everyone, please keep Mighty Miller in your thoughts and prayers. He is a very brave 15 year old who has fought and defeated acute myeloid leukemia (the most aggressive form of leukemia) TWICE and has endured multiple chemotherapy treatments and bone marrow transplants in his young life. After years of enduring pain and defeating the monster known as AML he is currently in comfort care at St. Jude’s as he is suffering from bronchiolitis obliterans, a rare lung disease that is a result of Graft-versus-host disease (GvHD), one of the many complications that can arise after receiving a bone marrow transplant where the donor’s cells attack the recipient’s body. He has a mommy and daddy and three younger siblings that are at his side.

We seem to have turned a corner that none of us have wanted to see. Sadly, we are beginning to see changes that make it feel like this truly may be the end of Miller’s journey on Earth. Our hearts are shattered, yet by God’s grace we are still standing.

Please continue to keep Miller and our entire family covered in prayer. He wants to live, and he also wants peace. His warrior spirit remains as strong and beautiful as ever. Right now he is sleeping and seems comfortable, and for that I am deeply grateful.

We are surrounded by people here who have become our St. Jude family.

Please also pray especially for Miller’s siblings. They are still so little, and this is all so very big and has been for a long time.

God, be near. Continue to show us Your mercy and carry us through each moment. 💙🧡

03/01/2026

Do you ever reflect on what having a rare disease means to you? This patient said, "Being happy with my family and don't care about yesterday and things which I can't change
and trust in modern medicine
and hope in the future."
Do you know other rare disease patients that you can talk to? AAMDSIF has several options if you'd like to chat with a group of other patients or parents here: https://www.aamds.org/support/patient-family-support-groups

02/15/2026

02/15/2026

On National Donor Day, we recognize the life-saving impact of both bone marrow and blood donors for individuals living with MDS. 💙

Many patients rely on regular blood transfusions, and for some, a bone marrow or stem cell transplant can be a critical treatment option. By donating blood, joining a marrow registry, or spreading awareness, you help provide hope, strength, and a future to those affected by MDS.

02/15/2026

At St. Jude Children’s Research Hospital, every child deserves to feel loved, supported, and surrounded by hope, today and every day. 💕

02/04/2026

Today is World Cancer Day and it is the 64th anniversary of when Danny Thomas opened the doors to his life’s mission, St. Jude’s Children’s Research Hospital!