Finding the Way Forward
If you are a newly diagnosed patient or caregiver of a brain tumor like craniopharyngioma, you are probably feeling overwhelmed and scared.
You may be wondering why and how this has happened to you or your family member.
You may be facing a lot of decisions about finding the best treatment and doctors, or maybe you or your loved one has already had the treatment to remove the tumor and now you are wondering, what’s next?
You are worried about what it means to have this brain tumor and what will become of you or your loved one’s health and life with this diagnosis.
We are so sorry to know that you are now a brain tumor patient or family member but we want you to know that you are NOT alone.
We, at the Raymond A. Wood Foundation “get it” because we have walked in your shoes. Founded by the parents of a boy with craniopharyngioma, we are an advocacy organization for survivors of hypothalamic-pituitary tumors and we are here for you.
Meet the Raymond A. Wood Foundation (RAWF)
As a patient advocacy organization, RAWF’s mission is to empower survivors of hypothalamic-pituitary brain tumors with an improved quality of life by providing access to education, technology, and evolving treatments.
As a rare disease advocacy organization, RAWF works with the FDA, other allied organizations, and pharmaceutical and medical device companies on behalf of its brain tumor survivor community.
RAWF is a proud grantee of the Chan Zuckerberg Initiative Rare as One Project and is using the resources from this opportunity to create a research network to address the most poorly understood and treatment-elusive conditions of craniopharyngioma survivors as well as to meet the needs of the most underserved population of our survivors.
Resources for Newly Diagnosed Patients and Families
Subscribe to Our YouTube Channel
RAWF has a YouTube Channel with educational videos. You can subscribe and get access to regularly updated content.
To see some of the other offerings of RAWF, check out the programs we offer on the website under Events.
Other Resources
There are online resources and support groups for craniopharyngioma patients and caregivers. Here are a few:
- Facebook Group for craniopharyngioma
- National Organization of Rare Disorders: craniopharyngioma
- National Institute of Health: craniopharyngioma
Contact Us
We offer mentorship opportunities for new families. Reach out and let us know how we can help you.
