What's New with RAWF?

Since the start of 2023, we have been hard at work expanding and strengthening the ways we improve the lives of rare brain tumor survivors. Our programs are only possible because of your continued generosity and engagement, and we look forward to making much more growth and change possible together.

Read on for the latest news and upcoming events!

Conference Update

Submissions are already rolling in for our sixth annual campaign and we know this is going to be the best show yet! The Art of Surviving gives our survivor community the opportunity to create and share their art work, while also funding our critical programs to improve these survivors' quality of life. Stay tuned for:

• May 1: Gallery opens for voting
• May 15: Winners of the art competition announced LIVE via Zoom
  • Register HERE
• May 15-31: Virtual art auction live for browsing and bidding 
• May 31: Reception and art exhibition in Fairfax, VA
  • Purchase your ticket HERE

Welcome New Members of the RAWF Board of Directors

We are honored to welcome Ethan Schilling, PhD and Soma Sengupta, MD, PhD, FRCP to our Board of Directors. Their expertise and experiences will drive our strategies and programs forward in numerous ways, and we're so inspired by and grateful for their involvement and enthusiasm for this mission.

Dr. Sengupta is board certified in Neurology and Neuro-Oncology. Clinically, Dr. Sengupta manages adult brain tumors and adult survivors of pediatric brain cancers at University of Cincinnati. Her clinical interests include multi-disciplinary neuro-oncology clinic, integrative medicine for brain tumor survivors, brain tumor neurogenetics patients. Read full bio »

Ethan Schilling is a nationally certified school psychologist with 10+ years of experience working with public schools and in academia. Dr. Schilling has worked as a professor of psychology/school psychology at Western Carolina University in in the Asheville, NC area where he has taught undergraduate courses in child development as well as specialized graduate courses in school psychology. Personally, both Ethan and his twin brother, Derek are childhood brain tumor (pineal germinoma) survivors. His brother was diagnosed at the age of 7 and Ethan was diagnosed with the same tumor 5 years later at the age of 12. Ethan is extremely passionate about supporting others going through the brain tumor journey. Read full bio »

New Educational Program: Monthly Learning Series

As a part of our mission, we lead educational initiatives for survivors, caregivers, and industry experts. In addition to our monthly virtual support groups, our educational series is officially underway! Free for members, we're eager to connect around critical health and wellness topics, from creating meaningful online communities for survivors to connect to navigating IEP/504 accommodations within school systems.

Our Annual Conference is back in-person this year!

Following a few years of virtual conference, our 2023 Annual Conference will be held at the Children's Hospital of Philadelphia from November 4-5, 2023. As our largest convening of the year and a symbol of our community and mission, planning is already well underway for this year's conference.

New Research Developments

Exciting progress has been made in the development of an at-home sodium meter. With a goal of having a device that can allow for rapid measurement of blood sodium in the home setting for better management of care, we have been collaborating with Children's Hospital of Philadelphia since early 2020. In 2021, with our support, Giner, Inc, a research and development firm, was awarded a grant for phase one of this project, which concluded at the end of 2022. During phase one, we began the work of determining the pathway for FDA approval. This work lays the foundation for phase two development, including prototyping and testing. This project is in year four, with hopes of a commercial use product at the end of 2027. Read more about this collaboration.

The Hypothalamic-Pituitary Tumor Patient Registry development is underway. The goal is to create an international central repository of caregiver and patient entered data about living with hypothalamic-pituitary tumor syndromes (H-P). The registry is being built on the National Organization of Rare Disorders (NORD) IAMRare Platform and is expected to launch in September. It aims to: 

• Support and accelerate the completion of clinical trials
• Gather evidence-based data on the viewpoints and unmet needs of caregivers and survivors with regards to the impact of disease and treatments on their quality of life, treatment priorities, and benefit/risk assessment
• Better understand the full spectrum of H-P symptoms, epidemiology, and progression of disease
• Improve patient care
• Facilitate research

Thank you for your support!

Our supporters are vital to driving our ongoing survivor outreach and educational programs, along with our efforts to accelerate important research. 

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