NEONATAL MARFAN
EDUCATION AND RESEARCH FUNDRAISER
The Neonatal Marfan Fundraiser aims to advance education and research of neonatal Marfan syndrome, (also known as early-onset or infantile Marfan syndrome), and ultimately discover a cure.
Your contributions are made in loving memory of all children who have bravely faced this challenge, and in honor of those who currently have this condition.
Invest in Hope
Neonatal Marfan syndrome presents significant challenges, often with rapid progression and complex medical needs. While standard Marfan syndrome is better understood, neonatal Marfan syndrome remains largely in the shadows of research and education. The lack of comprehensive data leaves families and medical professionals navigating treatment with limited evidence. To address this critical need, researchers at Stanford Children's Hospital are launching the first comprehensive survey on neonatal Marfan syndrome.
What your Donation Supports:
By investing in this survey and education, you are investing in a brighter future for children with neonatal Marfan syndrome. Your donation will lay the foundation for: Improved clinical guidelines and treatment protocols. Enhanced understanding of the genetic complexities of neonatal Marfan syndrome. A stronger, more informed community of families and healthcare professionals. Join us in building this legacy of hope. This initiative collaborates with other Neonatal Marfan initiatives.
Meet the Team:
This project is being led by Dr. Claudia Algaze, Director of the Cardiovascular Connective Tissue Disorders Program at Stanford Children’s Hospital, along with Emily Hardman, a dedicated advocate and researcher with a deep personal connection to the neonatal Marfan syndrome community. Their combined expertise and unwavering commitment drive this vital project.
(Pictured Above) Dr. Claudia Algaze, the study's principal investigator, with Michael Reading, a brave young neonatal Marfan warrior, at the 2023 Marfan walk. Michael sadly passed away in 2023 from neonatal Marfan Syndrome and is the inspiration behind this important study.
Your support makes this vital project possible, and we believe in keeping you connected to its impact. We will regularly share updates on our progress, milestones achieved, and the stories of the families you are helping.
Join us in this vital mission.
Together, we can illuminate the path forward for children with neonatal Marfan syndrome and their families. Your support is invaluable. Donate now and become a champion for the neonatal Marfan syndrome community.
Thank you for your support!
If you prefer to send a check, please make it out to The Marfan Foundation and mail it to:
The Marfan Foundation
ATTN: Neonatal Fundraiser
22 Manhasset Ave.
Port Washington, NY 11050