John Wolf


John Wolf
Aloha, Oregon

John has been a member of the ULF Board of Directors since 2007. He works in IT and engineering in the banking industry in Portland, Oregon.

John’s daughter, Ashley, was diagnosed with Cerebrotendinous Xanthomatosis (CTX) in 2004.

John serves as a patient liaison and works with other members of a patient advocacy Facebook group. The group helps connect affected individuals, their family members and caregivers with physicians and other patients, and to assist in the process to start treatment.

Additionally, John works to help ensure that a sustained supply of the medication is maintained.

John also participates in efforts to bring attention to the need for newborn screenings. He advocates for the nomination of newly developed tests to the recommended uniform screening panel (RUSP) as well as efforts to determine disease prevalence.

In his spare time, John enjoys spending time with his first grandchild, going to comedy shows and concerts.

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