Social Impact Heroes: Why & How Jack Johnson of Fabry Support & Information Group Is Helping To Change Our World
Building awareness within legislative organizations is just as important as building public awareness of a disease. I did not realize how much time and red tape are involved in moving legislative efforts forward.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Jack Johnson.
Jack Johnson is a 59-year-old father of two from Concordia, Missouri. He was diagnosed with Fabry disease when he was seven years old and comes from a family with an extensive history of the illness. In 1996, he founded the Fabry Support & Information Group (FSIG). He is now the Executive Director of the organization and spends his time providing support and advocating for others in the Fabry community.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
Thank you for helping me share my story! I have lived with Fabry disease, a rare genetic disorder, since I was born. The disease is caused by mutations in the α-galactosidase A (GLA) gene, resulting in a deficiency of an enzyme that is responsible for the breakdown of a fatty lipid in the body. Fabry disease can impact different people in different ways, but generally it affects many organs including the heart, kidney, and nervous system, resulting in potentially life-threatening complications and a reduced life expectancy.
My mother first noticed that I didn’t sweat when I was about four years old — this is one of the disease’s telltale symptoms. I was seven when I was officially diagnosed and by then I was experiencing pain crises that kept me from playing sports and being a “normal” kid. We knew from when I was young that my grandfather, mother and aunts all had the disease, but it wasn’t until I was in my early 20s that we learned the true extent of Fabry’s impact on my family. My uncle did extensive genealogy research. My mother and I used this to trace the disease back at least five generations in our family alone.
After learning about my family’s experiences, one of my doctors suggested that I start a support group for people living with Fabry disease and in 1996, I founded the Fabry Support & Information Group (FSIG). Eventually, running the organization became my full-time job and I am now the FSIG executive director. We are the leading national advocacy organization for Fabry patients, caregivers and families and I’m proud of the progress we’ve made, but I’m also excited to see what else we can achieve!
Can you share the most interesting story that happened to you since you began leading your company or organization?
The most interesting thing that’s happened has been being able to meet new people who are affected by Fabry disease. Many of them haven’t met someone else with the condition before and being able to see their reactions when they realize they are not alone is amazing. For those living with potentially devastating diagnoses like Fabry disease, it’s so important to have a sense of community and be able to speak with others who understand what you’re going through. It makes a huge difference.
It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
I can’t think of any funny mistakes made when I was first starting, but I think one of the most important misunderstandings we had about Fabry disease when I first began working in advocacy was that women cannot experience symptoms or complications of the condition because it is passed down on the X chromosome. Historically, women with Fabry disease were told that they didn’t have to worry about having the condition because they have two X chromosomes- one healthy and one not. We’ve learned over the years that this is far from the truth. My own mother experienced debilitating symptoms and dangerous health complications for decades before learning that they were being caused by Fabry disease. She eventually passed away from Fabry-related heart complications. Having an understanding that the condition can impact one’s life regardless of their gender has saved and prolonged many lives.
Can you describe how you or your organization is making a significant social impact?
Treatments for Fabry disease weren’t available until the early 2000s. While these have certainly had a positive impact on many patients’ lives, we’ve learned that a treatment approval doesn’t solve all of the problems associated with a rare disease. The FSIG has worked to address many of the remaining unmet needs in the patient community.
Our efforts have contributed to research of additional treatments that may allow for improved symptoms management, the implementation of newborn genetic screening programs that decrease patients’ time to diagnosis, and the acknowledgement of females who suffer from the devastating effects of Fabry disease.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
Since the FSIG was founded, thousands of individuals have gotten involved and been helped by our cause. In my opinion, one of the greatest impacts we’ve had is inspiring many of these individuals to reach out to their own communities to build further awareness of Fabry disease. Many of our organization’s members have shared their knowledge with their own family members and as a result, more people are getting diagnosed and treated. I love hearing those stories because they often mean that lives have been saved.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
1. Newborn screenings are crucial to ensuring that Fabry disease patients begin undergoing treatment and receiving medical care as early as possible. Screening efforts often come down to legislative and statewide efforts. It’s extremely important for legislators to pass newborn screening laws for Fabry disease and other lysosomal storage disorders.
2. It’s very important for the medical community and the public to be aware of the most updated information surrounding the impact Fabry disease can have on women. Some physicians know about Fabry disease but they haven’t heard about the latest research, including that it doesn’t only impact men. In recent years, we’ve learned that many X chromosome-linked conditions can impact women as well.
3. We are extremely fortunate to live during an era when there is a great deal of interest in better understanding Fabry disease. As a result, there has been an increase in research to improve overall understanding of the disease, which helps drug developers to bring new treatment options to the market that improve upon those currently available. My hope is that these organizations continue to find treatments that are safer and more convenient for patients so that we can live our lives to the fullest.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership is when an individual steps forward and is able to improve the lives of others through their actions. They are able to inspire others to become involved as well.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
1. Running an advocacy organization is a lot of work, but it leads to building amazing relationships with other members of the community.
2. It is important to maintain a work-life balance. Don’t let running an organization disrupt you from spending time with family and friends.
3. There can be a lot of travel involved in running a rare disease advocacy organization. It can be tiring but being able to attend patient meetings all over the country and bring the community together is very rewarding.
4. Building awareness within legislative organizations is just as important as building public awareness of a disease. I did not realize how much time and red tape are involved in moving legislative efforts forward.
5. Rare diseases aren’t always as “rare” as they seem. The more awareness we build of Fabry, the more people are realizing that the condition runs in their own families. Efforts as simple as sharing information about Fabry disease symptoms can lead to important conversations between family members and their physicians.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I would like to inspire more knowledge and awareness of Fabry disease in the medical community and in the public. Specifically, I want to spread information about the impact the condition can have on women.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“There are two ways to do something… the right way, and again.”
This is one of the quotes repeated during Navy SEAL training and it really resonates with me. I hate having to redo something because I didn’t do it correctly the first time.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I would like to speak with whoever has the most influence over health insurance regulations.
How can our readers further follow your work online?
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Heroes: Why & How Jack Johnson of Fabry Support & Information Group Is Helping To… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.