Community Advisory and Advocacy Committee
The Community Advisory and Advocacy Committee ensures that the perspectives and expertise of the larger community served by CurePSP are incorporated into CurePSP’s program development and strategic priorities.
Who we are: The CurePSP Community Advisory and Advocacy Committee is a diverse cross-section of people personally impacted by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA), healthcare professionals, volunteers, and staff who serve as advisors to and collaborators with CurePSP leadership.
Ileen McFarland, co-chair
After Ileen lost her husband to PSP in 2012, she became a full-time CurePSP volunteer. In addition to her long-time involvement with the CAAC, she serves on the CurePSP Board of Directors, planning committee for Hope as Big as Texas and Quality of Life Respite Grant committee. She facilitates support groups in her local community in Dallas, TX as well as virtually with CurePSP, and is a peer supporter. Her experience of caring for her late husband and serving many patients and care partners provides her with insight into the needs of our community.
Jessica Shurer, co-chair
Jessica Shurer, MSW, LCSW is the Director of Clinical Affairs and Advocacy of CurePSP, where she oversees the Centers of Care network and CurePSP’s resources aimed at increasing support, education and awareness of PSP, CBD and MSA. Prior to joining the team at CurePSP in October 2021, she served as the Center Coordinator & Clinical Social Worker of the Movement Disorders Center at the University of North Carolina at Chapel Hill, a CurePSP Center of Care and Parkinson’s Foundation Center of Excellence, where she worked closely with the PSP, CBD and MSA community over almost 10 years.
Julie is a macro social worker with extensive professional experience in legislative and community advocacy in the US and Canada. Her mother, Mary Ellen, passed away with a corticobasal degeneration diagnosis in early 2023 and Julie is committed to doing everything she can to bring awareness and fight for a cure, in memory of her mother.
The opportunity to serve CurePSP comes from the heart and as a promise to her parents to give back, contributing time and support with diseases that hit close to home. Amy learned through her journey just how precious shared time is, along with the joy, the commitments, and the weighty responsibility of caring for her mother and stepfather; for her, with Alzheimer’s Disease, for him with PSP. For her parents and the parents, spouses and families of others; she is honored to support the mission of CurePSP. Amy worked for over 28 years in the Banking, Financial Markets, and Insurance sectors and her Fuqua School of Business at UNC Chapel Hill degree pushed her in the direction of business and commerce. She’s happy to have the opportunity to apply that background, adding, when helpful, those skills to the governance of CurePSP.
Steven has been involved with CurePSP since his mother Noemi’s diagnosis of PSP in 2007. Towards the end of Noemi’s journey in 2013, Steve saw a gap in resources for those in the later stages of diagnosis and now facilitates the online support group, ‘Care Partners whose loved ones are in the Advanced Stages of PSP/CBD/MSA’. He is also involved in his local communities of New Jersey where he and other retired care partners stay connected and in Cordoba, Argentina where he is committed to helping the neurodegenerative community get the support and resources needed.
Fran cared for her spouse, Al, for 7 years. While caring for her husband, she advocated for and co-planned a patient and care partner exercise program for people with movement disorders. Her local Parkinson’s support group refers families who are diagnosed with PSP to her, and she helps to support them through their journey, including putting them in touch with CurePSP resources.
Adriana Gonzalez, MSW, LCSW, is the Social Worker at the Parkinson and other Movement Disorders Center at the University of California, San Diego. Adriana works collaboratively with the Center team to meet the changing needs of people living with a movement disorder and their family. As part of her work, she has developed a Latino outreach program and collaborated with support groups and community organizations to provide education about Parkinson’s disease, CBD, PSP and MSA. She is a strong advocate for assisting patients in maintaining their quality of life throughout their disease journey from diagnosis to advancing disease.
Al’s connection to CurePSP began in 2013 when his wife Eileen had PSP and they were helped by a CurePSP peer supporter. After Ileen’s death in 2016, Al became a Peer Support himself and has continued to committ himself to making the lives of those with PSP, CBD and MSA and their families better. He co-facilitates the Connecticut CurePSP support group, is a contributor to the CurePSP Care Partner Guidebook and Bereavement Resources section of the website, has been a CAAC member for 4 years and facilitates his church Bereavement Support Group. Al spent 38 years in the ball and roller bearing business and was the President of the Torrington Company, Vice President of Ingersoll Rand Company, and Chairman of the American Bearing Manufacturers Association.
Roxi was introduced to the CurePSP community when her mother had PSP and has been a member of the CAAC for 6 years. She is the longtime facilitator for the New Mexico support group for those with PSP, CBD, MSA and their care partners and is involved in local advocacy. Roxi also serves as a Peer Supporter and was a contributor to the bereavement Resources section of the CurePSP website. She has gained first-hand knowledge and experience through connecting with families as they navigate their journey, making recommendations to the committee on how best to serve and assist the larger community.
Maria Schmidt, DNP, RN, AGPCNP-BC is a movement disorders nurse practitioner at the Johns Hopkins Atypical Parkinsonism Center and CurePSP Centers of Care, and the Johns Hopkins Center for Music as Medicine. She is an active member of the CurePSP Patient and Caregiver Advocacy Committee, which allows her to act as an advocate and play an active role in community outreach, education, improvement of access to care and health equity, and provide both resources and support for patients with Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD) and Multiple System Atrophy (MSA).
Tom’s wife of 40 years, Liz, was diagnosed with possible MSA-C at age 57 in 2013. Five years later, including 2 ½ years in hospice, she passed at age 62 in December 2018, with a confirmed brain autopsy of MSA-C. Tom started his quest to find what he was up against immediately after Liz’s diagnosis and found CurePSP had a support group for Care Partners of People with MSA, which he started attending in January 2014. He became the facilitator in 2017 and has facilitated and co-facilitated over 160+ support group webinars for Care Partners of People with MSA, CBD and PSP. He currently sits on CurePSP’s Community Advisory and Advocacy Committee, volunteers for The MSA Coalition, Bayada Hospice, and his local Church visiting men that have lost their spouses.
Since joining the CurePSP team in 2016, Joanna has worn many hats within the Patient and Carepartner Advocacy Department. With her new appointment as Manager of Support Programs in 2022, she continues to support and provide resources to people affected by a diagnosis of PSP, CBD and MSA and their families. As the Manager of Support Programs, Joanna has focused her attention on meeting the needs of the CurePSP community through programs like the Quality of Life Respite Fund, the Brain Bank Donation Program, and support groups.
Kelsey is the Community and Resource Manager at CurePSP and has been part of the team since May of 2019. She provides those diagnosed and their families with resources on all aspects of the journey through direct phone connections, educational materials and support groups. She also oversees the national/international volunteer network of support group leaders and peer supporters.