Families Face Challenges Raising Money for Rare Diseases

Families that raise money for disease research after they learn a relative has a rare ailment may find it difficult to ensure that donations support studies that could help their family member, reports The Wall Street Journal.

One Massachusetts couple who raised a significant sum for research on pediatric brain tumors reached an arrangement with a nonprofit organization to create a special fund to support research into the kind of tumor their daughter has—juvenile pilocytic astrocytoma, or JPA.

Neal Levitan, executive director of the Brain Tumor Society, said his organization usually does not encourage such an arrangement, but did so because the family was raising a lot of money for an illness that needed more attention, the Journal reports. As a result, other families are inquiring about how to establish support for a specific type of research.

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