Few people have ever walked in your shoes.
There is great value in finding others who have shared the experience of loving and caring for a child with Sanfilippo Syndrome.
Support for You
Cure Sanfilippo Foundation was founded and is lead by parents of children with Sanfilippo Syndrome. This perspective drives the relentless goals, priorities, and actions of the Foundation.
Connecting With Fellow Parents
Finding people who share this unique life is an emotional lifeline. The Foundation’s network of 80+ families globally provides that instant social tribe of people with this shared experience.
The Foundation’s family conference calls (usually quarterly), e-mail updates, “virtual socials,” and other connection channels are an opportunity to share information. They also bring the community together to hear from one another and share this unique journey.
Reach out if you would like to be a part of these.
Support for Siblings
Siblings have a unique journey of their own, and often have to make significant sacrifices along the way. And they have unique needs of their own,
The BLAIR Connection
The Foundation has partnered with The BLAIR Connection, a support site for siblings of terminally-ill children. The BLAIR Connection for a place where siblings can connect with one another and find additional support as they experience the challenges of having a terminally-ill brother or sister.
Grey Chapin created The BLAIR Connection so siblings of terminally-ill kids would have a way to connect and tell their story. And Grey knows all about the sibling life. Her beloved sister Blair passed away in 2017 from Sanfilippo Syndrome.
Additional Resources
Courageous Parent Network
Courageous Parent Network
The Courageous Parent Network was created by parents, for parents, to support, guide, and strengthen families as they care for a seriously-ill child. The robust website has wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children—and get through each moment.
Caregiver Respite Program
NORD’s Rare Caregiver Respite Program provides financial assistance to eligible caregivers, covering up to $500 annually, so that a respite caregiver may be secured to care for a loved one living with a rare disorder.
Courageous Parent Network: Guide to Helping Siblings Cope
This guide for helping siblings cope is written by a psychologist and grief counselor and includes tips from fellow parents.
The Daily Motivator
The life of a caregiver for a child with Sanfilippo isn’t an easy one. Some parents have found this site’s daily motivational messages helpful for centering their thoughts for the day ahead.