RARE Daily

Rare Leader: Melissa Bryce Gamble, Executive Director, The Global Foundation for Peroxisomal Disorders

March 21, 2019

The Basics
Name: Melissa Bryce Gamble

Title: Executive Director and Co-Founder

Organization: The Global Foundation for Peroxisomal Disorders

Disease focus:  Peroxisomal biogenesis disorders (and related single enzyme peroxisomal deficiencies) are rare, genetic, terminal conditions that affect all major organ systems of the body. A peroxisomal disorder on the Zellweger spectrum (sometimes referred to as Zellweger syndrome) means that the peroxisomes in your cells aren’t working properly, are absent, or are severely decreased. Peroxisomes are necessary for cell function, normal brain development, and the formation of myelin.

Headquarters: Tulsa, Oklahoma

How did you become involved in rare disease: In 2008, my daughter Ginny was born with a peroxisomal disorder. It took us almost two years to get a correct diagnosis for her. During that time, I spent a lot of my waking hours searching the Internet trying to find other parents going through similar struggles. I spent a lot of time feeling isolated and alone. It was her diagnosis that spurred me to form this foundation later that year and get involved in the rare disease space.

Previous career: Elementary school teacher

Education: B.A. in education from the University of Tulsa

The Organization
Organization’s mission: Our mission is to improve the quality of life for patients living with peroxisomal disorders and their families through improved access to educational materials and support services, as well as promoting scientific collaboration and funding groundbreaking research.

Organization’s strategy: In 2017, we embarked on our first strategic planning process for the organization. What came out of that process was that we needed to focus on three areas: people, philanthropy, and perception. Since 2017, we have been obsessively networking to find the right people to fill Board roles, join our scientific community and take on staff roles that for the first six or seven years of the organization were all filled by volunteers (caregivers of patients with peroxisomal disorders). We’re also working on philanthropy, with a goal to establish a research endowment by the end of 2021 and building out our communications strategies to build our brand and help find and support as many patients and families as possible.    

Funding strategy: We’re trying to diversify our funding strategy. For the last eight years, our families have been our main fundraisers, hosting events in their own communities. This has been an incredibly successful strategy for growing our base. We have six local fundraisers scheduled this year (and one happening this weekend in Atlanta) that are hosted by families that either have a child living with a peroxisomal disorder or who, like me, have a child that has passed away. However, we know we need to be doing more. We’ve realized that if a family doesn’t host a fundraiser one year that we are depending on, or there is a downturn in the economy, our budget for the year could be in trouble.  To address this, we are now doing more grant writing and getting involved with local family foundations here in Tulsa to share our story. Tulsa is a very philanthropic community, and while we may not fit every foundation’s funding priorities, we’ve found if we can just get an appointment, and make the connection, we’ve been pretty successful. I’d encourage other patient advocacy groups to think about how they could diversify their funding strategies.

What’s changing at your organization in the next year: Change is happening all the time and every day is a new normal as we learn best practices for running a nonprofit. I’d say the biggest change this year is that we are expanding our family support programming to be more robust in terms of how we support families on a one-on-one basis and producing better educational programing than we’ve had in the past. We started out as an email group, and then we grew into a Facebook group. As our Facebook support group has grown, we’ve found we’re not able to meet all of the needs of our families through that group alone. We are being more intentional about the types of materials we are producing–parent guides, webinars, those sorts of things. This is a real positive change that has the possibility to impact a lot of families around the world.

Management Style
Management philosophy: Nothing about running a nonprofit has been easy, but management has definitely been my greatest challenge. Managing projects is totally within my wheelhouse, but I’m learning a lot about managing people- I’m still learning, and I am not perfect. My training as an elementary school teacher didn’t prepare me for this, so my philosophy has been to learn as much as I can about management and seek mentorship. The biggest lightbulb moment for me in the last year with management has been the importance of having the right people in the right positions. I’d encourage all leaders to read: Who by Geoff Smart and Randy Street. It was a really transformative read for me in sculpting my management philosophy.

Guiding principles for running an effective organization: Again, having the right people is so crucial. For the first six years of the organization, with no financial training at all, I did all the accounting and treasurer’s role in the organization. I used QuickBooks (and not very well). I sent donor receipts. As we grew, that job became enormous. One of the best things I did in 2016 was hire an accountant. Her assistance has been invaluable. Making sure you have the right people doing the job is critical. There were a lot of things we didn’t know about nonprofit management in the first six years of our organization. Being a life-long learner and getting help, getting mentorship and training, has been critical for us to make progress.

Best way to keep your organization relevant: I think it is listening—listening to our families impacted by this disease, listening to the scientists working that are devoting their lives to making our children’s lives better. That is the key—having that patient-caregiver-scientist input. Bringing all of these stakeholders to the table and trying to address these needs that our families have in the best way possible.

Why people like working with you: I have a pretty good sense of humor. I try (not always successfully) to not to take myself too seriously. And there’s a lot of comedy that happens when working with me because physically, I’m kind of a disaster. I fall a lot. I break things a lot. I laugh a lot. I’m a mother, so my life is messy and I try to be real about that.

Mentor: I have a bunch of mentors. I have an executive coach, Heather Richetto-Rumley, who I love and adore. Every time I meet with her, Heather opens my mind to new possibilities and helps me see different options for working through the same challenge. Dan Billingsley at the Oklahoma Center for Nonprofits has also been an incredibly helpful mentor and taught me so much about the nonprofit sector.

On the Job
What inspires you: I’m most inspired by our families who continue to get up day-after-day to advocate for our children within a medical community that still largely doesn’t know much about this disease. These beautiful, amazing, incredible kids with peroxisomal disorders and their caregivers are the most tenacious people I’ve ever met in my life.

What makes you hopeful: The networking that our scientific community does makes me hopeful. Knowing we have the right people working on this disease and the fact that we have great support from other organizations like Global Genes, NIH, and NORD. It would be hard to fulfill our mission without that support. The work that our GFPD Scientific Advisory Board does to network for us is incredibly inspiring and gives me hope.

Best organization decision: Hiring an accountant and expanding our board to include diversity of viewpoints from both caregivers of patients with peroxisomal disorders and community allies, who may have some professional expertise that we lack in our parent group.

Hardest lesson learned: Learning to work with a variety of personalities has been my greatest challenge.  I’m still growing and evolving in this area (and so many others).

Toughest organization decision: People decisions—hiring and firing is always hard.

Biggest missed opportunity: I’d say going down the advocacy road without having all of the tools to be effective. There have been times in the past few years we had opportunities to meet with members of Congress and I don’t think we did it very well initially. We’ve had a lot of training and learned what they need to make decisions. We’re still learning that.

Like best about the job: There are so many different things I like. Running a nonprofit is running a business, and there is a ton of diversity in the things I do on a daily basis. I’d be bored doing one thing, which is why teaching fifth grade math forever might not have suited me.

Like least about the job: Accounting

Pet peeve: Not having enough time to do all the things I want or need to do in my personal life. There’s always dirty laundry.

First choice for a new career: I’d like to do more writing. I’d like to get into a different area of nonprofit work or working in the public sector in health-related advocacy work.

Personal Taste
Most influential book: Audible has changed my life. I recently read Michelle Obama’s book Becoming. She’s still becoming. That’s a great lesson for me. If I’m not changing, I’m not growing.

Favorite movie: Beauty and the Beast (animated version)

Favorite music
: Listening to my children Jack and Avery play their violins.  They’re still “becoming” in this area.   

Favorite food: Anything I don’t have to cook

Guilty pleasure: DoorDash, Amazon Prime, and Instacart. Anything that delivers things directly to my house.

Favorite way to spend free time: Sitting on my patio watching my kids play outside.

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