2025 Year in Review: Advancing Research, Empowering Families, and Strengthening Community 

Advancing Innovation in Patient Care 

Progress on Home-Use Sodium Meter Development 

This year marked a major leap forward in one of RAWF’s most ambitious initiatives: the development of a home-use blood sodium meter. Designed to empower families facing chronic sodium instability due to hypothalamic–pituitary brain tumors, this device has the potential to reduce medical crises, prevent ER visits, and enable safer at-home management. 

Although inspired by the needs of the craniopharyngioma and hypothalamic–pituitary tumor community, this technology could ultimately impact a much wider group—including patients managing diabetes insipidus, heart failure, kidney disease, and other conditions where hydration and sodium balance are essential. 

As we prepare for the next stage, including regulatory planning and expanded user testing, we remain dedicated to ensuring that the final product is not only scientifically sound but accessible, affordable, and responsive to the needs of our community. 

Updating Our Groundbreaking Patient Registry 

In 2025, RAWF celebrated a year since the launch of a major research initiative: a comprehensive patient registry that captures real-world challenges, treatment gaps, and survivor-reported priorities. This registry is already informing future research directions and identifying unmet needs across the global survivor community with 392 participants across 23 countries worldwide Over the past year, we implemented 3 new research studies in the registry to better understand Hyperphagia, Fatigue (in collaboration with Rhythm Pharmaceuticals) and the perspectives of survivors and caregivers on the most impactful  health challenges and priorities for treatments. Gathering evidence-based real-world data directly from the community will help the research community to better understand the survivor’s journey and shape the research agenda to develop meaningful treatments to improve the lives of survivors.  

Patient Advocacy & Support

Expanding Access to Handheld Blood Analyzers 

This year, RAWF distributed six handheld blood analyzers to families across the United States. These devices are already transforming care at home by giving caregivers rapid sodium readings—reducing ER visits, preventing avoidable hospitalizations, and helping families make confident real-time decisions. 

To strengthen this program, we welcomed volunteer nurse Michele Blacksberg, who now provides personalized support, troubleshooting, and guidance for families actively using the devices. Her expertise has made these tools even more accessible and improved the overall experience for caregivers seeking stability in unpredictable medical situations. 

Building Community Through Support Groups 

In 2025, RAWF expanded its support programs to reflect the diverse and evolving needs of survivors, caregivers, and families. Through virtual sessions and personalized connections, we continued cultivating safe spaces grounded in empathy, education, and lived experience. 

This year, we hosted: 

• 12 Caregiver Support Groups 

• 12 Survivor Support Groups 

• 6 Teen Support Groups, tailored specifically to adolescent survivors 

Recognizing the profound need for grief-specific care, RAWF also introduced one-on-one grief sessions facilitated by Grief Support Specialist Holly Gainsboro, who works closely with individuals affected by brain tumor-related loss. These resources ensure that no one in our community walks their journey alone. 

Fundraising & Community Impact

DC’s Dancing Stars Gala: A Record Year 

RAWF was honored to once again be a 2025 beneficiary of the DC’s Dancing Stars Gala.  Our dancers Mike Brown and Adriana Fonseca both had a personal connection to our community; Mike’s great-niece Maddie bravely faced a craniopharyngioma at just 3 years old, and Adriana supports patients as a pediatric neuro-oncologist at Children’s National Hospital. They delivered a passionate and unforgettable performance—winning the Mirror Ball Trophy and raising an impressive $116,000 to support RAWF’s programs and innovations. 

NYC Half Marathon: Running With Purpose 

In March, a team of dedicated runners—including Ross Martin and Cecilia Scimia of Rhythm Pharmaceuticals, and David Johnson, caregiver to a craniopharyngioma survivor—took on the NYC Half Marathon on behalf of RAWF. Together, they raised nearly $15,000, helping to amplify awareness and bring national visibility to our mission. 

Art of Surviving: Creativity That Heals 

Our annual Art of Surviving online exhibit and competition was in May in honor of Brain Tumor Awareness Month—continues to highlight the talent and resilience of survivors worldwide. 

This year’s event welcomed: 

• 53 artists 

• 74 submissions 

• 22,839 votes from 281 supporters 

With diverse artwork representing healing, recovery, and lived experience, the 2025 exhibit raised $15,272 to support survivor programs and advocacy efforts. A returning panel of judges helped celebrate creativity across multiple categories, uplifting the voices and perspectives of the survivor community. 

Looking Ahead to 2026

This year demonstrated what is possible when patients, families, clinicians, and supporters work together toward innovation and compassionate care. In 2026, RAWF is committed to: 

• Advancing the development of the at-home sodium meter 

• Expanding research through the patient registry 

• Growing support programs for caregivers, teens, and those coping with grief 

• Strengthening partnerships with clinicians, researchers, and advocacy groups 

• Increasing awareness of the needs of pituitary brain tumor survivors worldwide 

RAWF remains driven by the vision of a world where survivors and families have the tools, knowledge, and community they need to thrive—not just survive. Thank you for making 2025 a year of meaningful progress. Together, we are building a future of improved care, stronger advocacy, and hope.