Rare Leader: Philip Robert, Founder, CEO, and Chief Encouragement Officer of The Burning Limb Foundation
April 20, 2018
Name: Philip Robert
Title: Founder, CEO, and Chief Encouragement Officer
Organization: The Burning Limb Foundation
Disease focus: Complex Regional Pain Syndrome. CRPS is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain that is out of proportion to the severity of the original injury. The exact cause of CRPS is not fully understood, although it may be associated with injury to the nerves, trauma, surgery, atherosclerotic cardiovascular disease, infection, or radiation therapy. CRPS is often known within the chronic community as the “suicide disease” because some people, unable to find relief, have taken their own lives. The condition is treated with a variety of approaches including pain management, high-dose ketamine, implanted stimulators. Other techniques involve restoring tone to the vagus nerve, Frequency Specific Microcurrent and Neuromuscular re-education therapy which are designed to bring balance to the autonomic nervous system and decrease inflammation in the nervous system. However, it remains difficult to treat and is poorly understood.
Headquarters: Frisco, Texas
How did you become involved in rare disease: I started my journey when my wife was diagnosed in 2015 with colorectal cancer. That was my first face-to-face experience with disease. I had a large blood clot in my left leg in October of 2015, which turned into a bilateral pulmonary embolism. The trauma from the clot was the trigger for CRPS. It was while I was in treatment for my CRPS that I was introduced on an intimate level to others who were suffering with the same disease. It was there in Fayetteville Arkansas that the seed of what has become The Burning Limb Foundation was germinated.
Previous career: I have been an equity portfolio manager and equity research analyst for most of my career. I currently work for Fidelity Investments in a client service role handling some of our largest strategic tax exempt clients.
Education: Bachelor’s degree in economics from the University of California, San Diego; and an MBA in finance in Rollins College
Organization’s mandate: The vision I had when I created The Burning Limb Foundation was to provide help to those suffering from complex regional pain syndrome. I felt I needed to stand in the gap where no one else was willing to provide financial help to those suffering from this disease. Our mission is to help those individuals, families, and caregivers to find their way to treatment by providing funding, especially for those unable to afford outside-the-box treatments. Because most of these non-allopathic treatments are not covered by insurance, by the time we connect with these potential recipients, they have exhausted all of their avenues and resources and financing treatment is a daunting task. We believe everyone, regardless of ability to pay, should have the same opportunity to heal.
Organization’s strategy: We want people to really connect with our story. Before I was diagnosed, I was completely unaware of what this disease was. From an operational perspective, our strategy is a multi-step process. We share our own experience, strength, and hope with those who come to us. We help guide our grant recipients through the host of potential treatment options. We talk about the people that we know, the doctors that we trust, and the pros and cons of what we’ve learned in our journey. This is a journey that has lots of twists and turns. By the time they have a diagnosis, they may have been through 10 or 12 physicians to finally find someone who diagnosed them. Once they’ve decided on a treatment option, we develop a strategy to start a fundraising campaign. Our goal is to provide seed funding and want our grant recipients to buy into the process and establish a GoFundMe account as treatment progresses, so they can have ownership as well. We want them to take an active role in their own recovery. We want to be in the trenches and doing the work. We’re not here to just spread awareness.
Funding strategy: We’re a young organization. We’ve had to rely on relational fundraising for now and leveraging our connections and our story to bring our message to an audience that’s willing to donate. I have several grant proposals in the pipeline now and plan to continue to develop our relationships with a lot of the large corporate entities moving into area.
What’s changing at your organization in the next year: Last year was sort of, “Let’s get this off the ground and get our website built” – even though we still made over $5,000 in grants. This year I want to build out our social media and web presence, but we’re not going to be a blog or awareness site. We’re all about action. Our primary focus will be on gaining fundraising traction here in the greater Dallas area where there is a generous philanthropic community.
Management philosophy: This is a family affair. I do a lot of management by walking around. It’s my wife and my daughter who are really involved in the foundation. We’re a family of empathics and encouragers. We’re going to have a message based on hope and courage. That means be selfless, be courageous, be the miracle. Live life on purpose.
Guiding principles for running an effective organization: We can boil it down to a couple of things. Be honest, be transparent, be judicious with donor money, and run with a low overhead in order to maximize flow to our grant recipients. We have a clear sense of purpose and passion for serving others. I was never the smartest analyst or portfolio manager, but I was good—however that that never lit me up like serving others does. Being inspired by the people we help keeps us filled with the desire to help many others.
Best way to keep your organization relevant: The number of people affected by this disease will just keep increasing. What we have to do as an organization is showcase the end result: seeing people find remission and relief from that chronic pain. If we can bring that story of hope to the table, I think we can appeal to many potential benefactors. We want to focus on those success stories. We want to show there is hope.
Why people like working for you: I don’t sweat the small stuff. I have a rich history and life experience both personally and professionally, that translates into perspective.
Mentor: I have several. My parents have been huge influences. My father has always had a way of looking at the world in a way that has resonated with me. My mother has been a huge giver. My wife Tracy is my mentor with the softer, more relational side of my life. I’ve had a couple of men in my life who have been incredible mentors. My friend Peter Palmer, who passed away from multiple myeloma in 2014, had a profound effect on me. From a spiritual perspective, he showed me to how to walk through difficulties with wisdom, humor, and grace during his battle with cancer. I have a couple of friends—Mike Reppert and Steve Wachs—who have modeled for me what it is like to be a man of faith and live a life of service. And probably next to my wife, the most inspirational of all is Dr. Katinka Van Der Merwe DC. She is the one who brought me back to health and fights every day for CRPS patients – she is one of those beautiful souls who has devoted her life and practice to healing those who suffer from this terrible disease.
On the Job
What inspires you: Bringing hope to the hopeless without question. To see the light come on in someone’s eyes when they see that they have an opportunity to get well. To watch patients, especially young ones, ring the bell when they finish treatment brings tears to my eyes. It is the most amazing thing to watch—people who were hopeless start to lead normal lives again.
What makes you hopeful: Seeing new ground being gained with new, outside-the-box treatment methods that don’t involve drugs or surgical procedures – that one day we will see more widely applied holistic approaches. I’m not anti-drug or anti-surgical intervention but because of my own journey having tried that route, that would be my last resort. I’d like to see more emphasis placed on treating neurologic dysfunction at its source, rather than a band aid approach, but I would also like to see us make advances in gut health and non-inflammatory diet choices.
Best organization decision: The genesis of The Burning Limb Foundation, how it came at such a dark and difficult time of my life. The distraction of pouring myself into something for the benefit of others really saved me from the day to day challenges that I faced.
Hardest lesson learned: Everyone wants a piece of the pie. Really be careful how you slice it.
Toughest organization decision: How we allocate grants. Everyone who comes to us is very deserving. With a limited funding pool, how do we help everyone? It just pains me to say, “I’m sorry we just don’t have it in the budget yet.”
Biggest missed opportunity: I don’t think we’ve missed one yet. For us, being so new, we haven’t had a chance to miss anything yet. Everything has been positive
Like best about the job: Being a servant-leader—being able to help others brings a tremendous amount of satisfaction to my life.
Like least about the job: Saying “no” and not having enough funds to help everyone. There are so many people who need our help and yet we cannot touch everybody.
Pet peeve: People who are takers rather than givers.
First choice for a new career: This is something I plan to do after I retire. I’d love to be in the philanthropic area 100 percent of the time.
Most influential book: The Bible without question and most recently The Noticer: Sometimes, all a person needs is a little perspective by Andy Andrews.
Favorite movie: Forrest Gump or Saving Private Ryan
Favorite music: I’m a child of the 80s, but I love contemporary gospel music.
Favorite food: Japanese or Thai.
Guilty pleasure: Cheating while I’m on a keto diet.
Favorite way to spend free time: My wife and I researching ways to improve our own health.
April 20, 2018
Photo: Philip and Tracy Robert
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