A new legislative council is bringing hope to families affected by rare diseases.
1.2 million Pennsylvanians are living with a rare disease.
The rarer the disease, the harder it is to raise awareness and funds for research.
“We can’t just let these families go and these lives are not expendable,” said Penny Brunner, founder of Smiles for Miles. “We’re our brothers’ keepers. We need to help each other.”
Brunner has seen rare disease up-close.
Her grandson, Miles, lives with Non-Ketotic Hyperglycinemia. Brunner founded Smiles for Miles in support of families like her’s.
She’s become an advocate, knocking on the doors of lawmakers in Harrisburg to help give families a voice. Her persistence paid off.
“As a family member that has a grandchild with a rare disease, it is very exciting that our state is leading in legislation by establishing a Pennsylvania Rare Disease Advisory Council,” Brunner said.
“As a nurse, I’ve seen a lot of those issues with rare diseases,” said Judy Ward, a state senator serving Pennsylvania’s 30th district.
Ward is the Senate co-chair of the Rare Disease Advisory Council.
She said the newly-formed council is one of the first of its kind in the country, bringing advocates for different diseases into one body.
The council’s new project: surveying the state to identify the types of rare diseases Pennsylvanians have, where they’re located and how it can help.
“There’s over 7,000 rare diseases and there’s 25 to 30 million American families that are affected,” Brunner said.
“Instead of each rare disease fundraising or looking for a cure themselves, collectively the group can advocate for all rare diseases,” Ward said.
Brunner said it gives families a voice and somewhere to turn for help.