A message from Amy Wood, Executive Director
My husband and I started this foundation in 2017 with a simple idea to provide handheld blood analyzers to brain tumor survivors like our son Alex. We had struggled so long to effectively manage his diabetes insipidus and the analyzer changed our lives. We knew others needed to have access to this device so we set out to remove the barriers to getting them. We quickly realized that there were so many other issues that needed to be tackled both for Alex and other survivors — issues likely faced by you or your child or loved one.
I have never run a nonprofit organization before, but I gathered my skills from a long career in web design, marketing and communications, and put them to work to build this organization. We then gathered a small board of directors, dedicated to the mission, and, together, we have created a small but mighty organization actively working to better the lives of brain tumor survivors. After running the foundation on the side from 2017 to 2020, I gave up my career and income as a creative director in a web development company to become the executive director of RAWF, which has been a passion project.
I, like many other caregivers of a brain tumor survivor, navigate my son’s good and bad days and advocate for his needs constantly. Maybe like you, I spend hours sorting out our health insurance issues, going to this specialist or that, working to make sure he is getting an education on his ability level, trying to find medications, therapies or tools that will help make his life better. Some days, it is a real challenge to keep it all together, but doing this work gives me some consolation for what Alex has been through and goes through daily.
To be able to keep moving forward, though, I need your help. The most effective rare disease foundations are those that are formed out of a desire for treatment development and improvements, made up of an army of those affected by the disease – parents, caregivers, family members, spouses and survivors.
Last week, we introduced a membership opportunity. This is the way we can build our army — a united group to tackle the bigger issues and get better treatments for both the tumors and the long term effects.
Helen Keller once said “Alone we can do so little; together we can do so much.” We have shown what this small foundation is capable of, with just a few people working together, but what could we do with a whole group of passionate people wanting to make change? I believe the possibilities are endless.
Will you help me? If you or your loved one have benefited from any of our programs and would like to see the work continue to flourish, please consider becoming a member to help us make a difference.