Jenny was diagnosed with GM1 Type 2 in September 2014.
Since then we have led the effort to share knowledge to raise awareness of GM1 Gangliosidosis in the Midwest states of Illinois, Missouri, Wisconsin, Indiana, Iowa, Michigan, and Minnesota.
Networking with the University of Minnesota, Lurie Children's Hospital of Chicago, the National Institute for Health (NIH), and the Cure GM1 Foundation we have quickly arrived at the learning forefront of this devastating rare illness for children and their families.
Our Mission
- Support Jenny's life journey
- Raise awareness of GM1
- Support on-going research for the cure
- Share our experiences and help other GM1 families cope
“Every morning we are born again.
What we do today matters most.”
What We've Achieved
The journey is just beginning, we have achieved much since 2014:
- Met many amazing people who have helped our family through this transition, and inspired us to organize.
- Established Jenny's GM1 Journey.org
- Began production on our first short film to be used for an upcoming crowd funding campaign to raise awareness and funds for the cure.
- Planned our first major benefit.
- Submitted 501c3 application to establish the foundation.