Rare Leader, Chip Chambers, Founder and President, DADA2 Foundation
March 5, 2020
Name: Chip Chambers
Title: Founder and president
Organization: DADA2 Foundation
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Disease focus: Deficiency of Adenosine Deaminase 2, or DADA2, is a rare genetic disease that causes a deficiency of the protein ADA2. This causes severe inflammation, which can result in strokes in children, problems with the kidneys, liver, fingers, and limbs. It can be deadly. It also causes immunodeficiency and bone marrow failure. Patients can have any and all of these symptoms.
Headquarters: Nashville, Tennessee
How did you become involved in rare disease: I don’t think there is one founder of a rare disease organization that really wants to be in that position, because what it means most of the time is that you have a family member with a rare disease. In my case, both of my children—my daughter who’s now 23 and my son who’s 16—have DADA2. My daughter was sick from about the age of 2. It took almost 15 years, when the disease was finally discovered in 2014, to get a diagnosis. I wanted to use my unique position of being a physician and father of two children with a rare disease to see how I could impact DADA2, meaning how can we quickly diagnose the disease? How can we find effective treatments and possibly a cure? How can we help the patients with the disease where possible?
Previous career: Former chief of endocrine surgery and currently serves as assistant clinical professor of surgery at Vanderbilt University Medical Center.
Education: B.S. in Chemistry from Millsaps College; M.D. from the University of Mississippi; Post Graduate training in surgery at Vanderbilt University Medical Center
Organization’s mission: Our mission is to bring together physicians, researchers, pharma, biotech, and most importantly patients and their families to accelerate research into DADA2, raise awareness about the condition, and improve the lives of DADA2 patients around the world. It’s simple, and it sounds straightforward, but I think we all know in the rare disease world that it can be a monumental task.
Organization’s strategy: In order to cure a disease, you need the researchers and you need the clinicians, who are seeing these patients and taking care of these patients, to come together. In medicine in the 21st century, we have this very disparate approach of how we tackle medical research and disseminate the information. To break down those barriers and get everybody talking as soon as possible after the discovery of a rare disease is crucial. We’ve done international conferences every other year to allow time for the science to catch up. It’s been a very effective technique for the foundation. At the 2018 DADA2 Conference, we had 123 physicians and scientists from 25 countries including Saudi Arabia and Japan. Most importantly, we had 93 patients and families from 16 countries including Palestine and Japan. It’s quite remarkable and it amazes me. Even though you’re only there for a day-and-a-half, its powerful having those patients, physicians, scientists, biotech, and pharma in one room to discuss the disease, to share ideas, and to look for new treatments.
Funding strategy: When we wanted to have the inaugural conference, I was meeting with Dan Kastner, the scientific director of the National Human Genome Research Institute at the National Institutes of Health, who discovered DADA2 in the United States. He thought that the NIH was going to be able to provide some funding for an international conference on DADA2, but near the end of the meeting he said, “We’re not going to be able to provide the funding.” That was the Debbie Downer for the meeting. I looked him straight in the eye and said, “Don’t worry about it. We’ve got the funding. Let’s pick a date.” We didn’t have the funding, or even a 501(c)3, but we raised the funds and formed a 501(c)3 in record time. Unlike a lot of foundations that tend to take a grassroots approach to fundraising, we did it more by engaging in what I would call “lumpy givers” who could give substantial amounts of money—in the tens of thousands of dollars range. We’re fortunate that we were able to raise all the funds needed to have the Inaugural International Conference on DADA2 in November 2016, which we believe is the shortest time between a disease being discovered and a conference of this scale. Now, being one of the recipients of the Chan Zuckerberg Initiative, Rare As One grant, we want to work more diligently on a fundraising strategy. For any rare disease foundation, everybody’s well-intended, the strategic plans may be great, but if you don’t have money to execute, that can be the Achilles heel.
What’s changing at your organization in the next year: We were one of the 30 recipients of the Chan Zuckerberg Initiative’s (CZI) Rare as One grant. They are not just giving money. They employ more than 500 people and will bring all their infrastructure, strategy, and fundraising ideas to bear for all 30 recipients. We will be working hand and glove with them to turn the DADA2 Foundation into an even stronger organization. We also are having the 3rd International Conference on DADA2 in November of this year.
Management philosophy: I don’t give up easily. If I am trying to engage a doctor, researcher, or company, I don’t give up. When the disease was discovered in 2014, I wanted to talk to the doctor in Jerusalem who discovered DADA2 in Israel. That was a fast conversation. It was 10 minutes or less, but I gained a lot of valuable information to help propel me forward and getting the conference set up. That’s my style. Fair and equitable, but dogged.
Guiding principles for running an effective organization: I’m in the business world of healthcare and have a team to support the work we do. I do that same thing – surround myself and the foundation – with people who add to the conversation, goals, work and outcomes in unique ways. Of course, it looks a little different when we’re all doing the foundation work on the side. Katherine Bell is the vice president of the foundation and she is phenomenally helpful, while also serving as the former editor of the Harvard Business Review online and the former editor-in-chief of Barron’s in New York. The CZI Rare As One grant is unique in that way. It brings more minds to the table to help us grow, in addition to financial resources. While I continue to focus on my two jobs and my family, this grant will help propel the foundation forward, and set up the organization so that I can be inspiring to the employees of the foundation and be the focal point for them to continue to drive things forward even when I’m not available to do it myself.
Best way to keep your organization relevant: The best way to keep relevant is to get out more and more in the medical community, push rare disease, and keep that before physicians and scientists. You hear these horror stories about patients who go to a doctor with some unusual signs/symptoms and the doctor thinks they’re crazy. I always taught my surgical residents to never diagnose a disease as fictitious until you’ve ruled out all organic causes of the disease. Having had two children now with a rare disease, and having gone through 15 years to get a diagnosis, I’ve changed that mantra. Now I say, “Never diagnose a disease as fictitious until you have ruled out all the organic causes and discovered the yet undiscovered rare disease that the patient has.” Because of my ability to engage the medical community and have substantive discussions about how we as a profession approach rare disease, the research around rare disease, and how we communicate about rare disease, I am in a unique position.
Why do people like working with you: What other doctors who come to the conferences tell me is that this is what medical conferences should be like. It should include all the different specialties that touch on a disease, and the patients should be there from the start. The reason that doctors travel from all over the globe to Bethesda, Maryland for our conference is because we’re able to create a venue and an environment where that kind of discussion can occur, and doctors love that.
Mentor: I can look at my surgical career and look back to Seshadri Raju, a professor of Vascular Surgery at the University of Mississippi School of Medicine. He is a doctor’s doctor and always put the patient first in everything he did. He was a perfectionist about getting the diagnosis right, and making sure that he was doing everything that he could do to help the patient. And, the patient comes first, sometimes at the expense of your own personal life. I’ve missed a lot of birthdays and family events over the years, but I could be operating on a patient to save their life.
On the Job
What inspires you: The patients, hands down. The emails from DADA2 patients around the world inspire me to keep doing what I do. It’s not always easy work, but without a doubt, it keeps me going.
What makes you hopeful: Scientific progress makes me hopeful. If you look at sickle cell disease, we knew the genetic defect 30 years ago, but it took 30 years to come up with some treatments and to find a gene therapy for the disease that is curative. Now, with the advances in CRISPR Cas9, which is allowing us to do this incredible editing of the DNA, I am hopeful that gene therapy and or gene editing is going to be the solution for a lot of what’s called monogenetic rare diseases. I think it holds great promise. It’s the most exciting time in my career in medicine to see that we could cure a disease by fixing one of the base pairs in the 3 billion base pairs that make up our DNA. That’s just remarkable. And it’s not theory. This is being done and diseases are being cured.
Best organization decision: Having the international conferences on DADA2. Getting that international conference going as quickly as we did after the discovery of the disease has been foundational.
Hardest lesson learned: Even though you want to do more, and you want to advance more quickly, when you don’t have the organizational structure and funds, you must pace yourself and your goals.
Toughest organization decision: There are DADA2 patients who contact the foundation where I hoped that I could do more but may not have the ability or funds to assist. Also, in planning the international conference, there are tons of micro and macro decisions, but all those decisions are so important because it brings everyone together, and that’s why we do it.
Biggest missed opportunity: The biggest missed opportunity may have been not involving more biotech and pharma companies in our conferences from the outset. They are the ones that are going to produce a drug or gene therapy. We did have some engaged, but I think having more engaged from the outset would have been better.
Like best about the job: I am a surgeon, but I’ve become an armchair rheumatologist, immunologist, hematologist, and geneticist. I like to listen to the patients who need to vent. And where I can step in and help, I do. Sometimes that’s just getting them to a doctor who has some knowledge of DADA2 or getting their doctor to talk to another doctor.
Like least about the job: It often encroaches on my day job, but it’s a nice encroachment. There’s nothing I don’t like about it.
Pet peeve: I have to work with organized people. I’m an ultra-type A. I love to be around people who are smarter than me, but I like to be around people who are organized so we don’t go down rabbit holes that are not germane to what we are trying to accomplish.
First choice for a new career: Running the DADA2 Foundation full-time and becoming an international advocate for rare disease—that would be a phenomenal job.
Most influential book: Chasing My Cure: A Doctor’s Race to Turn Hope into Action by David Feigenbaum
Favorite movie: Patton
Favorite music: I listen to all types of music. I live in Nashville, Tennessee which is called Music City and I do like country music, but I like all kinds of music as well.
Favorite food: Sushi
Guilty pleasure: Strawberry shortcake
Favorite way to spend free time: Spending my free time with my family, which is harder and harder with careers and children growing up, but we always make time for each other.
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