The Raymond A. Wood Foundation (RAWF), a rare disease patient advocacy organization, whose mission is to empower survivors of hypothalamic-pituitary (H-P) brain tumors with an improved quality of life by providing access to education, technology, and evolving treatments, announces exciting changes to the foundation’s board of directors including the addition of Christine Selko and the election of Eugenie Hsu, Ph.D. as chairperson.
Mom of Craniopharyngioma Survivor and 19-Year Advocate, Chris Selko, Joins RAWF Board
Chris is an adjunct professor teaching College Composition, Developmental Reading and Writing, and ESL classes to a diverse population in many different environments for the past 25 years. In 2002, the youngest of her four children was diagnosed with a craniopharyngioma and life changed dramatically. Out of her commitment to improving circumstances for her son, she began working in advocacy. Chris says she learned a lot and made many mistakes over the last 19 years in her search for the best possible options for her son to have a fulfilling and happy life while trying to keep her entire family intact as they dealt with the challenges that came with his diagnosis.
Chris has worked with the Statewide Parent Advocacy Network as a Family Research Specialist and a Parent-to-Parent Outreach Coordinator. She continues to help families dealing with the diagnosis of a brain tumor as a peer mentor for the Pediatric Brain Tumor Foundation.
“I realize every family’s journey is different; however, the fear and feelings of desperation that a family feels with a tumor diagnosis are the same, “ said Chris. “For this reason, I have worked to help other families who are facing uncertainty while dealing with a sick child. My goal is to offer support and provide any assistance I can.”
Chris feels that through the dynamic work of the RAWF community, she believes survivors, like her son, will find the alternatives and solutions that will give them the quality of life that every person deserves.
Board Member, Eugenie Hsu, Ph.D., Elected Chairperson of RAW
Eugenie Hsu joined the RAWF board of directors in March of 2020 when the foundation began evolving its mission and role in advocating for survivors of H-P brain tumors. Over the last two years, she has been a driving force behind the growth of the foundation. She is the chair of the communications committee, sits on the research committee and moderates a monthly caregiver support group for parents and caregivers of teens and young adult craniopharyngioma survivors. Additionally, Eugenie was instrumental in developing the grant application for the Chan Zuckerberg Initiative Rare As One Cycle Two which was awarded to RAWF in fall of 2021 and is transformative in growing RAWF’s research work and capacity. She also sponsored a matching donation campaign for Giving Tuesday which raised almost $30,000 for the RAWF Roar for Rare campaign.
Eugenie Hsu is a licensed psychologist and retired in 2021 after working on staff at Kaiser Permanente Oakland Medical Center in adult psychiatry since 1994. Since retiring from Kaiser, Eugenie maintains a private practice where she specializes in treating survivors of trauma. Eugenie has a B.A in Psychology from the University of California in Davis and a Ph.D. in Clinical Psychology from the California School of Professional Psychology.
After her son was diagnosed and treated for a craniopharyngioma brain tumor when he was 8, Eugenie became focused upon finding solutions and treatments to improve his and other survivors’ quality of life. In 2016, she conducted an experimental treatment on her son using the neurohormone, oxytocin; subsequently, she chronicled their experiences in a widely-read blog (Hope for HO) and the successful treatment resulted in her publishing a case report in the Journal of Clinical Endocrinology and Metabolism.
According to Eugenie, “I live by my belief that patient-caregiver advocates can advance science and innovations to improve patients’ health and quality of life.”
Growing and Evolving
Over the next few months, RAWF will be expanding its staff and developing a research roadmap around craniopharyngioma, in addition to its current programs including providing handheld blood analyzers to pediatric brain tumor patients with complicated diabetes insipidus, hosting monthly learning events, planning the yearly virtual conference, and collaborating on the development of an at-home sodium meter.
“We are really optimistic that the growth over the next few months will really position the Raymond A. Wood Foundation as a strong voice for solutions in the treatment of these tumors and ongoing management of the complexities that survivors face,” said Amy Wood, executive director of RAWF. “We are thrilled to have Chris join the board and Eugenie in the chair role because their passion and commitment will drive this work even further.”
How Can You Get Involved?
The work of the Raymond A. Wood Foundation is primarily funded by individual donors. One time contributions, monthly donations, hosting a fundraiser or joining as a member are all ways to support and grow the work of RAWF. The foundation is also seeking committed and passionate board members who have skills in business administration, finance, marketing, healthcare and fundraising to join our board. For more information on how to support RAWF, email Amy Wood at firstname.lastname@example.org.