Rare Leader: Amy Wood, Executive Director, Raymond A. Wood Foundation

The Basics
Name: Amy Wood

Title: Executive director

Organization: Raymond A. Wood Foundation

Social Media Links:

Disease focus: Hypothalamic pituitary brain tumors, particularly craniopharyngiomas, and the comorbidities or rare conditions that then result from those tumors.

Headquarters: Ocean City, Maryland

How did you become involved in rare disease: I got involved on May 22, 2015, when my son Alex was diagnosed with a rare brain tumor craniopharyngioma. That was just a regular Thursday in May. We woke up, business as usual and as the day progressed. We realized something was wrong and we ended up in the emergency room and they found a mass in the middle of his brain. It was an emergency situation. They had to remove it. Then all of these other conditions started to result. As we started to pick apart what solutions were available to us, or how we would manage these conditions, we soon realized there weren’t a lot of resources. It was just life’s journey that brought me to this role.

Previous career: Creative director for a web application development firm

Education: Bachelor’s degree in Mass Communications from Towson University, Masters’ degree in Graphic Design from Savannah College of Art and Design

The Organization
Organization’s mission: Our mission is to improve the quality of life of hypothalamic pituitary brain tumor survivors, both pediatric and adults. We do that mostly through improving access to education, resources, technology, and evolving treatments.

Organization’s strategy: In 2020 we put together the foundation’s governance and strategic plan. In the midst of putting the strategic plan together COVID happened and that created some uncertainty. We act as a bridge—bridging the gap between the patient and medical communities, because there was definitely a gap. We had put our focus on building capacity, and we set goals of developing partnerships to expand our reach. We needed to increase our funding to further sustainability and we needed to work to increase awareness of the burden of this disease. We started to put together some plans of gathering data through surveys and then reporting on that data. And this year we’ll actually go back to that plan. It’s been two years and we will start looking at what we accomplished and then strategize for the next two years.

Funding strategy: Our funding strategy, much like the foundation, started by tapping our network, support from friends and family. In 2020, we had plans in place. Those, of course, got changed. We creatively pulled things together. As a former web designer, I’m good at making things happen online. So that worked out pretty well. But then we actually hired a development director over the summer and put together a campaign, which is called ROAR for rare. It’s an 18-month campaign, with a goal of raising $500,000 to fund four programs. The foundation of that campaign is cultivating relationships with our donors and engaging our patient community to help widen our reach.

What’s changing at your organization in the next year: We received exciting news in October that we are grantees of the Chan Zuckerberg initiative’s Rare As One network. That is going to be a big change for us over the year because that allows us to build our capacity. We’ll be able to bring on staff to support our research goals. One of our goals over the next year is reaching underserved populations, which we currently struggle to reach and provide support. That’s going to be one of our big goals over the next year. Being part of that particular network is a big, exciting change for us.

Management Style
Management philosophy: Communication and collaboration with doctors, our patient community, our board, and our staff is essential. Having open conversations and having everyone bring ideas to the table. Our communication is open. Communication is key to my management philosophy.

Guiding principles for running an effective organization: Transparency for sure and building trust among our community and our stakeholders. We value people’s contributions. You hear all the time about being authentic, but I think it’s important because I am not a scientist. I have other skills I’m bringing to this table. Authentically, and having everybody sort of bring those skills without any fear of it not being important to our work. And then growing diversity, because I feel like we need an organization that looks at problems from all perspectives. The solutions that we work to achieve serves all, not just some, so that’s an important principle for our organization.

Best way to keep your organization relevant: It’s important to be an active member within the patient community and in the support groups. I say this from a personal perspective because I’ve grown into a leadership role in this particular brain tumor and the subsequent conditions. When you start getting into that kind of role, you lose touch with the day to day, of course. I’m facing a lot of challenges, but I’m long in the journey. My son’s been almost a seven-year survivor. Participating in support groups and the social media is important seeing relevant because it keeps you in touch with what are the current common questions? What are the current topics of conversation? Where are those unmet needs? Because some stay the same and some change over time. And it’s also important to remember what it’s like to be in the beginning of this. That’s an important thing that sometimes when you’re farther out in the journey, or you get caught up in the research and all of, the professional aspects of this, you have to remind yourself what this felt like years ago and what would I do have done years ago. Those are the things I think are important, keeping us relevant because we do absolutely need to support the patient community and be aware of the current challenges they face.

Why people like working with you: I asked a coworker and she said, “I get it.” I agree with her response. She said my creativity, perseverance, and resilience, and having a vision for connecting the people and the pieces to move this forward. I think resilience is important because there can be some definite knockdowns and resilience as being a mom of a brain tumor survivor is inherent. I also like to try to keep things light and friendly and have some humor because that at least keeps it manageable.

Mentor: Through the years and various facets of my career, I’ve have been fortunate to have so many different mentors, but I would say from a foundation perspective, our development director Linda Hanifin Bonner, she has such an immense background in nonprofit management, and she has mentored me in this role. I’m grateful for that. And from a perspective of working with the medical community, I would say Shana McCormack, who is a pediatric endocrinologist at Children’s Hospital of Philadelphia. She has been a wonderful mentor from that perspective. Lastly, I look to Kathy Riley from the Pediatric Brain Tumor Foundation as a mentor from the patient advocacy perspective. I have had a great honor to get to know her over the years and learn from her experience of balancing being in this professional role and being a mom of a brain tumor survivor.

On the Job
What inspires you: I would say mostly my son, because I would not be doing this if it weren’t for him. His optimism and his outlook on life always inspire me daily, but also finding better solutions for him is what inspires me in this role.

What makes you hopeful: The little wins really keep me going and keep me hopeful. Sometimes when things seem really hard, it always seems like something comes through, like the CZI grant, for example, or, maybe getting the opportunity to speak with someone who can really contribute to our work. Those things always seem to pop up and really keep me hopeful that we’re in the right direction.

Best organization decision: To take this from what was really just an endeavor on my husband’s and my part to becoming a voice of people with these tumors. These tumors are survivable. On paper, they don’t look as grave as some of the other brain tumors, particularly pediatric brain tumors. But what gets missed is the long-term outcomes are so challenging. In the landscape of brain tumor advocacy, there wasn’t a voice specific to these tumors. I think the best decision we made was to home in on these tumors and focus on advocating for the survivors. We originally were focused on pediatric brain tumor survivors, but there is an adult population of tumor survivors that are either diagnosed in adulthood or are children that have grown up with this. They didn’t have any support. Expanding our mission to advocate for them as well was one of our best decisions.

Hardest lesson learned: So far, it’s a common life lesson, but when it looks easy, it’s usually not the right choice. That’s a hard lesson we can learn in all facets of life, but one that I have also learned in this role.

Toughest organization decision: Moving me into a role as a paid director. That was a tough decision that initially felt uncomfortable to take money for this work. But I couldn’t run the organization without being in a paid position because of my financial obligations.

Biggest missed opportunity: I am sure there is one or a few that aren’t coming to mind. I think for a small, grassroots organization, we have seized any and all opportunities that come our way. That said, we are small and so we don’t have the people to actively seek out opportunities—so we are reactive not proactive at this point, but I think that will change as we grow our capacity and reach.

Like best about the job: Knowing that I’m doing everything I can for Alex and his cohort. That gives me a lot of a good feeling that I’m I’m doing something that can potentially make a difference. It also gives me a little sense of control in the chaos. We’re dealing personally with a lot still every day with the challenges that come with these tumors. I’m doing a little bit to have a little more control of his long-term outcome in a way of doing my best to try to create better solutions.

Like least about the job: I feel like I can’t escape brain tumors. I live with it and work with it. It’s always a part of every facet of my life.

Pet Peeve: Eating during Zoom meetings.

First choice for a new career: I would love to be a functional medicine doctor as I am interested in the treatment of all systems as opposed to isolating systems and the approach of food as medicine. The other is to be an author.

Personal Taste
Most influential book: The Everyday Hero Manifesto: Activate Your Positivity, Maximize Your Productivity, Serve the World by Robin Sharma

Favorite movie: Almost any movie with Reese Witherspoon

Favorite music: Michael Franti & Spearhead, Dave Matthews Band

Favorite food: Cheese and bread, together or separate

Guilty pleasure: Pickle chips and Ellen Hilderbrand novels

Favorite way to spend free time: Exercising, running, and cooking. My son has to be on a special diet, and I enjoy trying to find recipes and cooking different foods. I live near the beach, so beach time is always I priority and always enjoy reading. Reading is my favorite way to spend free time.