Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Emma's Fund for Families

When we look back on our time with Emma we don't focus on the medical equipment, the seizures, the medications, or the feedings.  We remember all the memories we made with her.  We were determined to give Emma as normal of a life as possible and tried to do as much with her as we could.  From trips to the zoo, baseball games, days at the beach, apple picking, going to the top of the Empire State Building, and having tea at the Plaza with Eloise, we have so many things to choose from and numerous pictures to remind us of the good moments.

Emma’s Fund for Families is established to enable families to have memory making opportunities in honor of Emma.  The purpose of the fund is to allow affected families to apply for grants to use towards enrichment activities.  It can be used any way a family feels would be beneficial for creating their memories, such as trips to the zoo, photo shoots, tickets to an event, an overnight in a hotel with a pool, etc.  Anything that your family feels would provide a break from the routine and some fun times with your child is eligible.  We hope all families have the opportunity to make amazing memories. 

Download an application here.


Emma with Daddy at a Mets game

Resting on the beach


Emma at Frozen on Ice


Apple Picking 

Relaxing poolside  


















Support Resources

New Family Packet
Request it today by completing our online request form: Contact Us

Benton's Family Assistance Fund
Learn more here about how this fund helps families.

Care Plan Template
Download   documenthere(315 KB) .

Courageous Parents Network (CPN)

Emma's Fund for Families
Learn more here about how this fund helps families create memories.

Rare Siblings Project

The Quinn Madeline Foundation
Awareness for hope. Memories for life.

Learn more here.