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Young parents Fred and Vicki Modell are overjoyed by the arrival of their first child, a perfect baby boy they name Jeffrey. But just months later, it becomes clear that something is wrong. Jeffrey is diagnosed with a rare disease that leaves him frequently sick and perilously susceptible to even the most common cold. He begs his parents to “Do Something” and though they desperately try, Jeffrey ultimately succumbs to his illness at the age of 15.
Out of their devastating loss, Fred and Vicki turn to their enduring love for each other to find the strength to fulfill their promise to Jeffrey and they resolve to ‘do something.’ With just $500 in the bank, the couple sets out in search for answers to what took his life. Guided by Jeffrey’s memory and the hope to help just one child, Fred and Vicki turn pain into purpose and end up touching the lives of parents and children all across the world. Millions of lives have been forever changed because of Fred and Vicki's determination to “Do Something.”
Welcome to JMF’s blog, Vicki’s Voice! We love hearing from people in our community, and our blog provides a meaningful platform for us to communicate and connect. Here on the blog, we share more personal stories about our programs, patient experiences, Foundation milestones, caregiver health, updates from the lab, and more topics to support our global PI community.
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Today we are delighted to share our recent spotlight interview with Austin Stack. Austin was diagnosed with X-Linked Agammaglobulinemia (XLA) at the age of three, and is the founder of XLA Life, a patient advocacy group that unites and empowers the XLA community. We hope you enjoy reading about Austin’s background, inspiration, and hopes for the future!
Tell us a bit about your background.
After I was diagnosed with XLA at 3 years old, I was exposed to the fascinating world of immunology at a young age. This led me to major in Microbiology & Immunology at McGill University, then research the immune system at the National Institute of Allergy and Infectious Diseases (NIAID). After much experience in research, I wanted to pivot into advocacy and business which led to the founding of XLA Life, the first XLA-specific patient advocacy group. I love learning new topics.
For hobbies: I really enjoy skiing, rock climbing, and collecting baseball/soccer cards. I am a big New York Mets fan. I’m always trying out new things to stay stimulated. Lately, it’s been chess, dancing, and DJing.
What is your favorite childhood memory?
My all-time favorite memory (non-childhood): catching a home run at a Mets game 2018. I didn’t see the swing, and the crowd rising around me was the only sign to look for a ball flying right at me. Next thing I knew, my friend was hitting me in celebration and the ball was in my hands. I’ll usually give any ball I get to a young fan around me, but this one I will keep forever. Watch here!
Favorite childhood memory: traveling to Lake George with my family. We would get a cabin by the lake and spend a week doing everything from archery, sailing, to fire pits.
What was it like growing up with X-Linked Agammaglobulinemia (XLA)?
Growing up with XLA made me feel different. The experiences associated with XLA - countless doctors’ visits, missed school days, and infusions - were completely unique to me, and this made it hard to relate to everyone else. I didn’t have an XLA “role model” to look up to, and felt very alone, even through adulthood! I was fortunate to have a very supportive family, and we would travel to conferences together. It did feel like XLA drove a lot of my childhood… but more on that later.
Have you felt at any point growing up that you were “defined” by your disease?
I had a really tough time answering this question. Growing up, I certainly felt defined by my disease. However, I do not think that is healthy and I hope to change my thought on this. I brought this up with my parents and we had a very candid discussion on the topic. They really tried their hardest to raise me so I wouldn’t feel defined by XLA, and they did a really great job. However, it is something out of their control, and something I had to learn myself as the one experiencing the feelings. While there are still times that I resent having XLA, I have become more at peace with it than ever before. It helps to be proactive and work to help the community.
What inspired you to create XLA Life?
Once I realized pure science research was not for me, I wanted to dive headfirst into business. XLA Life started as an amalgamation of my strengths/experiences in immunology and patient advocacy with a burning desire to start something of my own. XLA Life was inspired by several factors. Existing patient advocacy groups - JFM, IDF, SCID Angels for Life, Rare Advocacy Movement - were all vital to XLA Life’s founding. The success of initiatives from those groups demonstrated that anything was possible with the right collaboration. The success of JMF and SCID Angels for Life in getting SCID on newborn screening panels in all 50 states demonstrated that the right partnership can lead to life-saving changes. I wanted to be a part of that and do similar activities for XLA.
How do you envision XLA Life evolving in the future?
I hope XLA Life becomes a self-sustaining, supportive community home to all XLA families. My dream is that it is always run by someone with XLA, with one patient passing the torch on to another until the ultimate goal of a cure is realized. I want the XLA community to really own XLA Life, and make it their own to pursue projects that would benefit the whole PI community.
Also, I hope it leads to more immunology cartoons to educate others in a fun, digestible manner.
You studied microbiology and immunology in college. Did studying these fields impact your experience as a patient?
First, I just want to say, the more I learned about immunology, the more fascinated I became! It is an infinitely complex army that forms the boundary between you and everything else in the universe.
Studying immunology absolutely impacted my experience as a patient! I wanted to understand how XLA affected my body from the most foundational levels, and it is incredibly empowering. Now I can talk to doctors at a much higher level of understanding. In fact, whenever I visit a new doctor, I ask them what their favorite immune cell is and why. It often catches them a little off-guard, it’s fun to hear their answers. As patients, we know more about how XLA affects our body than any immunologist, but being able to know the biological basis as to why made me feel more in touch with my body.
While it is very empowering to learn more, it is also very scary when it comes to primary immune deficiencies. I distinctly remember learning that kids with XLA used to rarely make it into adulthood. It left me thinking, “If I was born some decades earlier, I wouldn’t be alive right now.”
After college you spent time working at the National Institute of Allergy and Infectious Disease (NIAID). What was your biggest takeaway from that experience and working environment?
My biggest takeaway from working at the National Institute of Allergy and Infectious Disease was ultimately one of gratitude. The people who dedicate their lives to researching and treating PI - Dr. Notarangelo, Dr. Cunningham-Rundles, Dr. Conley and so many more - are simply amazing. Starting at NIAID, I was overwhelmed by the magnitude and scope of work being done. Those working in PI sacrifice their time and energy to help the PI community and deserve more recognition. With their research, we - PI patients - are in good hands and I feel optimistic for our future.
Tell us about your decision to pursue your MBA.
Starting XLA Life was difficult, and running the nonprofit myself showed me that I had a lot to learn before XLA Life could really lift off. I saw the MBA as a way to accelerate my knowledge and feel more confident in my position as a leader. I’ve always said I want to see rare diseases from all perspectives, and that includes the business side. The MBA has already opened up many doors for me into the business realm. I can confidently say it’s been the right decision.
What do you wish more people knew about living with a PI?
Living with PI has many consequences, varying from the inconveniences of dealing with the healthcare system to the sometimes-debilitating bouts with illness. The hardest thing to explain, in my opinion, is how our baseline - our feeling of normal - is not exactly “normal.” I get sick a lot; I’m accustomed to it. Some months, I’m just always sick and have to live my life as best I can. After a bout with a particularly bad spell, I’ll often hear “you sound and look much better!” While I may feel “better,” I probably do not feel good. Just better than feeling very sick. Even when I’m feeling “very healthy,” there’s always lingering symptoms such as an earache or sinus headache. I understand it is very difficult to empathize with such a feeling and that is why I wish people living with PI could understand feeling truly healthy, more than others knowing what we feel like. A common response from patients who underwent successful cell transplants is, “I didn’t know what it meant to feel normal.” I hope that we can all feel normal in the near future.
How do you explain living with a PI to your friends, family, coworkers, etc.?
It’s not easy to articulate what it’s like to live with a PI. It’s much easier with family and close friends who have seen the infusions and sicknesses. Living with XLA makes it tough to imagine what it feels like to truly be “healthy.” The hardest part is always feeling under the weather. Even when I appear very healthy, I still feel like I’m running at about 80%. Sometimes I just need a day of rest to get a bit better even if I appear to be doing okay.
Do you have any advice that you’d like to share with our patient community?
Understand that living with a PI is tough, and that’s okay. We are at an unfortunate disadvantage when it comes to our health; it’s unfair, and that’s okay too. You are different, so be different and use it to your advantage! You are your best ally when it comes to your health: listen to your body and treat it well. Live in harmony with your mind, don’t let your condition define you, or stop you from doing what you want. Go down the endless rabbit hole of immunology and find out which cell is your favorite. Be kind to others and keep your head high. Oh, and call your representative to advocate for better healthcare.
What are your hopes and dreams for the future?
I hope for a kinder, more empathetic world. One where the healthcare system works for those who use it the most. Ultimately, I dream of a functional and accessible cure for XLA. (Secondly, for the Mets to win the world series).