In less than two weeks our family will be traveling to upstate New York for the Hunter’s Hope Family Symposium, and we are so excited. It will be so incredible to be with so many other Krabbe and Leukodystrophy families because no one understands our journey like they do.
While we are there, we will be participating in a short walk (less than a mile, since our babies are fragile) to raise money for Hunter’s Hope.
This organization does so much! One of their biggest roles is to work on adding Krabbe to the Newborn Screenings in each state (43 to go).
Had Pennsylvania had legislation and Newborn Screening in place, it is likely that Tori would have had a stem-cell transplant shortly after birth and she would be healthy. This testing is crucial!
We have set our family fundraising goal at $1,000 to help this amazing foundation in their research, advocacy, and family support for Krabbe and Leukodystrophy. We would love to exceed that goal!
Would you be willing to donate to Hunter’s Hope for our team? If so, you can donate here:
Let’s support this amazing organization that is doing so much for our Krabbe and Leukodystrophy babies. ❤️