Urge your Members of Congress to Reverse the 57% Cut to the Congressionally Directed Medical Research Program
Federal budget negotiations are already under way.
pediatric patient / parent
AAMDSIF Supports the Accelerating Kids' Access to Care Act
AAMDSIF Supports the Accelerating Kids' Access to Care Act.
On March 26, 2025, AAMDSIF joined with 212 additional patient advocacy and medical center organizations in urging members of the US Congress to pass the Accelerating Kids’ Access to Care Act.
Passage of this bill will permit faster, more thorough care, for children with complex medical conditions.
Please view the PDF below.
Putting Treatment Behind Him: Webb's Journey through Aplastic Anemia
Person's Name:
Webb Kosich
Webb was in university, playing soccer, when he started noticing a rash and breathlessness during a run. He’d never had either symptom, particularly since he was in such good shape, playing soccer since the age of three.
Bone Marrow Disease(s):
Content source:
Karyn Brundige, MSN, CPNP
Brundige, Karyn
Pediatric Nurse Practitioner
Dana-Farber Cancer Institute
Online Profile:
Hassan Alkhateeb, MD
Alkhateeb, Hassan
Assistant Professor of Medicine
Mayo Clinic - Rochester
Kathleen Overholt, MD
Overholt, Kathleen
Associate Professor of Pediatrics
Riley Children’s Hospital at Indiana University
Learn about PNH (Paroxysmal Nocturnal Hemoglobinuria)
Now a Nurse, 10-Year-Old Xisto Survived Aplastic Anemia
Person's Name:
Xisto Montoya
By the time he was 10 years old, Xisto had earned a Black Belt in taekwando. He was traveling to, and winning, competitions.
Yet he was tired enough to fall asleep at unusual times. Then the petechiae developed, all over his feet and hips. Multiple doctors assumed this was a rash, and since he didn’t show signs of illness, he continued with his busy life.
Bone Marrow Disease(s):
Content source:
Safe, Successful Pregnancies Possible After AlloHCT
Findings refute former consensus that pregnancies post-transplant are nearly impossible, highlight need for increased fertility counseling
(WASHINGTON, July 15, 2024) — Despite treatment-related fertility challenges, female patients can become pregnant and give birth to healthy children after undergoing allogeneic hematopoietic cell transplantation (alloHCT), according to a study published in Blood.
Teen Athlete's Normal Life Interrupted by Severe Aplastic Anemia and Lengthy Treatment
Person's Name:
Patrick McLaughlin
“You must go to Children’s Hospital now.”
Ninth grader Patrick McLaughlin was surprised, but followed his mom’s lead, who calmly drove to the Emergency Department while disguising her fear and confusion.
Earlier that week, while Ellie was on a business trip, her elder son, Liam, called. “Mom, Paddy’s still sleeping after early dismissal.” It was 8:30pm. At that moment, she knew that she needed to take him to the doctor. She flew home as soon as she could, picked Patrick up at track and field workout, and dashed to the pediatrician’s office.
Bone Marrow Disease(s):
Content source: