An 18-Month Campaign to Fund Four Critically Needed Projects
The Raymond A. Wood Foundation (RAWF) – a patient-led, rare disease advocacy organization – announces the launch of ROAR for RARE, a campaign to raise $500,000 over the next year and a half to fund four critically needed projects that will drastically improve the quality of life for hypothalamic-pituitary (H-P) brain tumor survivors.
“This is an ambitious endeavor, but we are committed to raising these critical funds to support our efforts in finding better solutions for survivors of rare brain tumors,” said RAWF Executive Director Amy Wood.
The ROAR for RARE campaign specifically aims to raise funds for: 1) the development of an at-home sodium meter for better management of diabetes insipidus, a condition often brought on by H-P tumors or their treatment, 2) continued support for the handheld blood analyzer program that has proven beneficial in mitigating ER visits and hospital stays for pediatric patients, 3) providing small research grants focused on getting more researchers involved in identifying different approaches to treating H-P brain tumors and their comorbidities, and 4) creating an online resource hub of research and specialists for both pediatric and adult survivors.
According to RAWF Development Director Linda Hanifin Bonner, “The continuing need for our resources from the patient and medical community, as well as the growth in our work over the past five years, is clear evidence that more must be done.”
ROAR for RARE is a call to action representing the important fact that H-P tumors are rare to begin with and, because of their location in the brain, they (or their treatment) can cause other rare, lifelong medical conditions. The campaign was developed by Carrie Haynes of Cause Creative under the guidance of Hanifin Bonner.
For more information about this campaign and to see the stories of our survivors, visit rawoodfoundation.org/roar