Firefly Fund contributes to Rush University Medical Center’s Families Helping Families Pediatric Neurology Rare Disease Patient Access Fund. The fund, which is under the direction of neurologist Dr. Elizabeth M. Berry-Kravis, allows lower-income families of children with rare diseases, including NPC, to immediately begin receiving the most advanced care available for their children. Berry-Kravis and her team treat families from all over the country. Firefly Fund’s support of Families Helping Families changes lives.
“The fund does not support a lot of patients, but it allows us to treat specific patients who otherwise will not be able to get treatment and will permanently lose function and even die if we don’t treat them,” Berry-Kravis said. “The fund also allows us to start treating immediately without waiting the many months it will take to get state Medicaid insurance approval while the patient loses skills and neurological function forever.”