Last weekend, the Raymond A. Wood Foundation (RAWF), a brain tumor patient advocacy nonprofit organization, hosted the Pituitary Brain Tumor Virtual Conference in partnership with the Children’s Hospital of Philadelphia (CHOP). The event brought in an audience of brain tumor survivors and caregivers from around the globe.
RAWF advocates for hypothalamic-pituitary brain tumor survivors. Usually benign, these tumors, including craniopharyngioma, labeled the “most formidable of intracranial tumors” by Harvey Cushing, the father of modern neurosurgery, are rare and highly survivable. However, because of their location in the central part of the brain, these tumors and treatments of the tumors often result in poor quality of life outcomes for patients and place a significant burden on caregivers.
In 2017, RAWF was founded in honor of Alex Wood, 10, Ocean City, MD, who, at age 4, was suddenly diagnosed and faced emergency removal of a craniopharyngioma. For Alex, and many survivors like him, the treatment of the tumor caused many rare and difficult-to-manage chronic medical conditions. In the last year alone, he was hospitalized twice for complications from these conditions. The foundation was started by providing medical devices to patients like Alex to manage diabetes insipidus, which is the a rare disorder where the hypothalamus does not adequately control body fluid balance causing abnormal blood sodium levels. The initiative to provide these hospital-grade devices was initially funded through local support.
“RAWF and the patients we advocate for owe a huge amount of gratitude to our local community,” said Amy Wood, executive director. “The support of our friends, neighbors and local businesses here in Ocean City helped launch what is becoming a global organization, working to find solutions for child and adult survivors like Alex, who face so many challenges.”
The Pituitary Brain Tumor Virtual Conference was originally planned to take place in May at CHOP but moved to the virtual platform due to COVID-19. Without the barriers of geography, patients from the United States, Malaysia, the Netherlands, United Kingdom, Australia and Canada joined online for presentations by leading clinicians, researchers and experts from CHOP, Seattle Children’s, Texas Children’s, Kennedy Krieger Institute, University Hospital of Bordeaux, France, and Rigshospitalet Copenhagen University Hospital in Denmark .
Among the topics discussed was hypothalamic obesity (HO), a devastating side effect of these tumors, that results in insatiable hunger and rapid and uncontrollable weight gain unresponsive to diet and exercise. HO can lead to other challenging medical conditions including type 2 diabetes and non-alcoholic fatty liver disease, while also presenting significant day-to-day challenges for the patient and caregiver.
“In the last year, we have seen real movement in the medical community to find a treatment for this desperate condition and RAWF works to support researchers in treatment development.” said Wood. “We are also working with neuro-oncologists to find better ways to treat these tumors in the outset to avoid this end result.“
The Raymond A. Wood Foundation’s mission is to empower hypothalamic-pituitary brain tumor survivors for improved quality of life by providing access to education, technology, and evolving treatments. Donate to support this mission.
Special thank you to Saniona and ConSynance Therapeutics for sponsoring this event and for their work in developing promising treatments for hypothalamic obesity.
Dr. Christian Roth of Seattle Children’s Hospital, presents on Hypothalamic Obesity at the Pituitary Tumor Virtual Conference hosted by RAWF and CHOP.
