Reflecting on a Year of Growth, Resilience, and Community Impact
As we close 2024, the Raymond A. Wood Foundation reflects on a year marked by significant achievements in research, patient advocacy, and support for survivors of hypothalamic-pituitary brain tumors. These milestones were made possible through the dedication of our supporters, collaborators, and the resilient community we serve.
Research Highlights
This year, the foundation cemented its role as a leader in patient-centered research initiatives:
- Patient Registry Launch: We proudly launched the Hypothalamic-Pituitary Brain Tumors Patient Registry. This vital tool connects survivors and caregivers with opportunities to contribute to groundbreaking research, shaping a deeper understanding of the impact of these tumors and the rare conditions that result, including hypothalamic obesity.
- Executive Council Membership: We continued as members of the Children’s Brain Tumor Network (CBTN) Executive Council. CBTN is a growing brain tumor biobank that provides sample data to researchers to accelerate brain tumor research. Through our collaboration with CBTN, we aim to connect our patient registry data to craniopharyngioma tissue samples.
- Progress on the Sodium Meter: The development of the at-home sodium meter remained a cornerstone of our work. In 2024, we focused on seeking funding opportunities to advance the development of this transformative tool, which has the potential to revolutionize care for individuals with sodium imbalances.
- Research Collaborations: Through partnerships led by our scientific director, Dr. Nathalie Kayadjanian, we’ve fostered advancements in areas such as hypothalamic obesity, quality-of-life improvements, and the integration of patient-reported outcomes into treatment planning.
Advocacy and Support
We continued to strengthen our advocacy and patient support efforts, ensuring survivors and families have access to the resources they need:
- Educational Initiatives: We hosted webinars and added content to our YouTube channel to educate patients and families about tumors, treatments, and care management.
- Newly Diagnosed Patient Mentorship: We supported families beginning their journey by pairing them with mentors to answer questions and provide guidance.
- Community Growth: The patient registry’s launch and engagement efforts amplified patient voices in research and created a more connected global community.
- Awareness: We hosted the 6th Annual Art of Surviving, raising awareness of the brain tumor journey during Brain Tumor Awareness Month.
- Support Groups: Monthly caregiver and survivor support groups provided safe spaces to share experiences and connect with others.
- Handheld Blood Analyzers for Diabetes Insipidus Management: This year, we distributed five handheld blood analyzers to pediatric patients, empowering families to better manage diabetes insipidus and improve day-to-day care.
Fundraising and Development
In 2024, the Raymond A. Wood Foundation experienced a year of transformative fundraising, fueled by the generosity and enthusiasm of our supporters:
- Charity Partner for the NYC Half Marathon: We were thrilled to become a charity partner for the prestigious NYC Half Marathon. Our dedicated team of runners not only raised funds but also brought national attention to the needs of hypothalamic-pituitary brain tumor survivors.
- Brain Tumor Awareness Month Matching Gift Campaign: During May, we launched a successful Matching Gift Campaign. Thanks to the generosity of our board and matching partners, we doubled the impact of contributions, driving critical funds toward research and patient advocacy programs.
- DC Dancing Stars Gala: As a returning beneficiary of the DC Dancing Stars Gala, we raised significant funds to continue initiatives like the at-home sodium meter project. The event showcased the incredible power of community-driven philanthropy.
- Giving Tuesday: Shore Gives More Campaign: We wrapped up the year with the Shore Gives More campaign. This community-based initiative engaged local supporters and contributed to our year-end fundraising goals, ensuring the sustainability of our programs and services.
Navigating the Transition Beyond CZI Grant Funding
In 2024, we marked the conclusion of the CZI Rare As One Network grant, which provided transformative support over the past few years. While the grant funding has ended, our commitment to collaboration within the Rare As One Network remains steadfast. As active members of this inspiring community, we continue to work alongside rare disease colleagues, sharing experiences and strategies to drive progress. The relationships and knowledge gained through this network will continue to shape and strengthen our mission.
Looking Forward
2024 has been a year of growth, learning, and impact. As we look ahead to 2025, we are energized by opportunities to expand our reach, develop new resources, and continue our mission to improve the quality of life for survivors and their families. We remain committed to ethical collaboration with research and corporate partners, ensuring the community’s best interests remain at the heart of everything we do.
Gratitude for Our Supporters
Thank you to everyone who has contributed to our mission this year. Your generosity, time, and dedication make it possible to pursue groundbreaking research, provide essential resources, and advocate for meaningful change.
Together, we are creating a brighter future for survivors. Here’s to building on this momentum in 2025!
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