2023 has been a remarkable year for the Raymond A. Wood Foundation, one filled with progress, impact, and meaningful milestones. As we look back on the past year, we’re excited to share the highlights that have shaped our journey in the areas of education, research, support, development, and growth.
Growth & Development
- Year Two with the Chan Zuckerberg Initiative: We saw continued growth as a part of the Chan Zuckerberg Initiative Rare as One Network, marking the second year of this impactful journey. Support from this grant has helped us expand our reach and advocate for survivors of hypothalamic-pituitary brain tumors on a larger scale.
- Celebrating Survivors: We hosted our 5th Annual Art of Surviving in recognition of Brain Tumor Awareness Month. This year, we brought our virtual art exhibition to life for our first in-person reception and gallery in Falls Church, VA, where we showcased the artistic work of our brain tumor community.
- Raising Funds and Excitement: Our 2023 Big Fish Classic Ford Bronco Raffle not only generated excitement and anticipation for the big winner, but also raised crucial funds for our foundation, enabling us to continue our vital work in direct support of survivors and caregivers.
- Team Expansion: We welcomed Meghan Wood, Major Gifts Officer, to our team, strengthening our capacity for growth and impact.
- New Board Members: We were thrilled to welcome three new board members, Josh Blumenthal, Joan Saperstein, MD, and Ethan Schilling, PhD. Their diverse expertise has enriched our leadership.
- Moving Up: Jamie Ping assumed a larger role within RAWF, from Outreach Coordinator to Communications & Outreach Manager.
- Moving On: Our remaining founding board members, Shawn Wood and Caroline Coakley, moved into Board Emeriti roles. We remain deeply grateful for their service.
Education & Outreach
- Sharing Knowledge Globally: Our very own Amy Wood had the honor of presenting at the International Brain Tumor Alliance Global Summit in Vienna, Austria. Her presentation on “Novel Approaches to Supporting Young Hypothalamic-Pituitary Brain Tumor Patients” showcased the experience of surviving a craniopharyngioma and our dedication to spreading awareness on a global stage.
- Reconnecting In-Person: After a hiatus, we hosted our first in-person Pituitary Brain Tumor Family Conference since 2019 at Children’s Hospital of Philadelphia. Topics covered integrative health, endocrine issues, social and sleep challenges, as well as opportunities to network and create community.
- Growing Awareness: Amy Wood participated in a panel, sharing the importance of data in rare disease research, at Komodo Week in Las Vegas last March and presented on the hypothalamic obesity patient and caregiver perspective in Boston for Rhythm Pharmaceuticals R&D event earlier this month.
Research
- Funding Medical Innovation: RAWF continued to invest in and advise on the development of an at-home sodium meter for the management of care in diabetes insipidus and other diseases that require sodium testing. This project will be a major focus in 2024!
- Patient Registry Initiative: In 2023, we embarked on the development of the Hypothalamic-Pituitary Brain Tumor Patient Registry, a significant milestone guided by Nathalie Kayadjanian PhD and our Patient Registry Advisory Board. This registry promises to be a valuable resource for advancing research and understanding these rare tumors.
- Strengthening Research Expertise: Our Scientific Advisory Board hosted two convenings and welcomed Dr. Soma Sengupta as a new member, further reinforcing RAWF’s commitment to research excellence.
- Contributing to Medical Knowledge: We made a meaningful contribution to the medical community by publishing “Caregiver Burden and Its Relationship to Health-Related Quality of Life in Craniopharyngioma Survivors” in the Journal of Clinical Endocrinology and Metabolism, shedding light on an important aspect of our mission.
- Collaborative Endeavors: We continued to financially support and serve on the Executive Council of the Children’s Brain Tumor Network. This collaboration supports a biobank of tumor tissue to accelerate research in craniopharyngioma. Additionally, we participated in the PNOC Craniopharyngioma Working Group.
Support
- Community Support: Monthly support groups for caregivers and survivors continued to be a crucial part of our educational efforts. These groups provided a space for sharing experiences, offering support, and building a strong, caring community. Additionally, we extended mentorship opportunities to newly diagnosed families, guiding them through their journey with compassion and expertise.
- Enhanced Online Experience: We unveiled a brand-new website in 2023, designed to be a comprehensive resource hub for patients and families. It now offers easier access to information on research, clinical trials, support services, and physician finders.
- Management of Care: We continued to provide handheld blood analyzers to families with pediatric patients navigating challenging diabetes insipidus from a brain tumor. This was the project that launched RAWF and remains an important part of our work. We currently have 30 handheld blood analyzers in circulation.
As we reflect upon these highlights, we extend our heartfelt gratitude to our community, team, and partners for their unwavering support. Together, we’ve achieved incredible milestones in 2023, and we’re excited about the future.
Thank you for joining us on this mission of advocacy, education, and support for our rare brain tumor community. We look forward to another year of progress and making a difference in the lives of those we serve!
