The CurePSP Support Network
CurePSP offers patients, families and carepartners help when they most need it through its support groups, family conferences, Patient Engagement Program, patient education days, carepartner retreats and financial subsidies for needed services.
CurePSP encourages and organizes activities that foster face-to-face communication, exchange and interaction for comfort and mutual benefit to group members who are caregivers, family members, friends and patients with PSP, CBD, MSA and related diseases.
CurePSP has created the Respite Fund to ease the financial burden of getting professional, in-home respite care. Our goal in developing the fund is to reduce the stress that is often experienced by care partners.
Among its various educational activities, CurePSP sponsors and organizes family conferences across the country, providing people with the opportunity to learn more about PSP, CBD and MSA and to develop a sense of community. We recognize that these diseases present daily challenges for patients and families.
The Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic in Jacksonville, Florida, supported by CurePSP, provides an invaluable resource to investigators by providing tissue samples for their research. It also provides a postmortem confirmation of diagnosis to families of the deceased. CurePSP reimburses families for the costs of brain donation.
Patient Engagement Program (PEP)
CurePSP’s Patient Engagement Program (PEP) works with pharmaceutical companies and contract research organizations (CRO’s) to facilitate human clinical trials that are essential to advancing science and bringing new drugs to the market for rare diseases.