How to help
How to help
Embedded Files
You helped us reach the FDA. Now, we need Congress to make sure they listen.
Right now, life-saving rare disease treatments are stuck in FDA delays, including a gene therapy for Sanfilippo syndrome, a disease that robs children of their ability to walk, talk, and eat.
To help us reach Congress, pick one or all three of the options below.
Add your information to this template letter and it will automatically be sent to your members of Congress.
Calls are even more important! Staffers track every single call that comes in to show members of Congress what is important. Staffers will simply be listening and taking notes, so don't stress!
Congress is at home until September 1. Now is your opportunity to call and request to meet with them using the talking points we've prepared. You don't have to be an expert! Meetings can be in person or virtual.
Welcome to Hope for Merrick!
This page is dedicated to raising awareness and funds to support research for a cure for Sanfilippo Syndrome, a rare and devastating neurodegenerative disease affecting our beloved son, Merrick, and many other children around the world.
Merrick is a joyful child who loves puzzles, monster trucks, and Transformers. Despite his abundant energy and love for life, Merrick faces immense challenges due to Sanfilippo Syndrome, often likened to Alzheimer's in children. This heartbreaking condition leads to progressive mental and physical decline, with no FDA-approved treatment or cure currently available.
Our mission is to support the Cure Sanfilippo Foundation's efforts in funding critical research and clinical trials aimed at finding a cure. Through our fundraising initiatives, especially our "Cure Merrick" campaigns, community engagement, and spreading awareness, we aim to bring hope and action together to make a difference in Merrick's life and the lives of countless other children battling this disease.
Join us on this journey of hope and support. Together, we can make progress towards a cure for Merrick and all children affected by Sanfilippo Syndrome.
Thank you for your love, support, and generous contributions.
With gratitude, Nancy and Matt
Page updated
Google Sites
Report abuse