RARE Daily

Rare Leader, Todd Talarico, President, The APS Type 1 Foundation

August 27, 2020

The Basics
Name: Todd Talarico

Title: President

Organization: The APS Type 1 Foundation

Social Media Links:

Disease focus: APS Type 1 is a rare genetic disorder caused by mutations of the AIRE gene. Mutations in AIRE lead to multi-organ system autoimmunity typified by three classic manifestations:

Autoimmune Hypoparathyroidism: a malfunction of the parathyroid glands.  These glands secrete a hormone that regulates the body’s use of calcium and phosphorus.  Hypoparathyroidism can cause a tingling sensation in the lips, fingers, and toes; muscle pain and cramping; weakness; fatigue; and even seizures.

Adrenal Insufficiency (also known as Addison’s Disease): a malfunction of the small hormone-producing glands on top of each kidney (adrenal glands). The main features of Addison’s Disease include fatigue, muscle weakness, loss of appetite, weight loss, low blood pressure, and changes in skin coloring.  If left untreated, adrenal crisis may occur leading to death.

Chronic Mucocutaneous Candidiasis: a fungal infection that affects the skin and mucous membranes, such as the moist lining of the nose and mouth. In children with APS Type 1, these infections last a long time and tend to recur.

Headquarters: Stony Brook, New York

How did you become involved in rare disease: I have a daughter that has APS type 1. We spent a number of years with all kinds of weird things happening at a young age. You had a lot of puzzle pieces, but no understanding of how to put it together. Finally, when she was 11, she was diagnosed. Once we found what it was, the physicians told us our daughter is APS Type 1 and these are the things we know about it. I quickly Googled it and found nothing. I was like, holy crap, we have a rare disorder and I couldn’t find anything. The other issue is it’s called APECED in Europe. That’s autoimmune polyendocrinopathy candidiasis ectodermal dystrophy. It’s a much longer name, but we didn’t use it in the U.S., so I wasn’t even Googling the right thing. The initial start was to find out more information about this disorder. That was the early days of her diagnosis around 2006. I started to build enough information to be able to create a website which was the early critical link to finding other APS Type 1 Families.  We’re on our third revision of the site now. From there, things started to evolve. Then we met a very wonderful family in Stony Brook Long Island. Between Sherri and Dave Seyfert, and my wife Heather and I, we started the journey to become a foundation. There was nothing in the early days…now there is a place of support… we became a foundation in 2014.

Previous career: Currently serve as a biotechnology executive

Education: B.S. in biology from Bloomsburg University of Pennsylvania, M.S. in health/healthcare administration/management from College of Saint Elizabeth

The Organization
Organization’s mandate: Our focus is really on education, fundraising for research to find a cure, and awareness, not only at the patient level, but also at the physician level. We build our organization’s activities around these three pillars.

Organization’s strategy: We’re very careful and deliberate in regard to our activities and what we lean into. We’re an ultra-rare condition. We have a very small, volunteer board. We look at all situations that are coming at us, either from the patient community or from the research community. The number one question we ask ourselves: do they fit into the mindset of what we’re trying to accomplish here based on these pillars of education, research, and awareness? Then we determine what’s the greatest need at this juncture for the community and who’s going to be able to execute on it.

Funding strategy: Our board is comprised fully of volunteers with some part-time paid support.  We spend 97 cents of every dollar raised on foundational activities. Most of the fundraising is generated through our patients and families and flows into all opportunities we see coming down the pike that provide the right fit for the organization. We’ve coordinated seven research grants with National Organization for Rare Disorders, and we’ve raised close to $600,000 for those grants. We also fund a biannual international symposium as well as look for other grant opportunities through other support organizations.   As an example…Global Genes COVID grant program was a wonderful program for our community. We have an actively engaged board and we all chug on our own as best we can to bring in as much fundraising as we can. Our community is critical to our success and continued work.

What’s changing at your organization in the next year: I would say what’s on everybody’s mind is COVID, and how COVID is going to change our engagement virtually with our membership and what that means to the organization. We’re looking at how we stay connected with our community if we can’t meet face-to-face every other year. What do we do from virtual platforms? With the support of IDF, we’ve started a monthly Zoom Get Connected series. That’s been helpful for our community. We’re trying. It was the early days of COVID that flatlined us a little bit because many of us were dealing with a lot of other issues in our own homes and in our own families that created a lot of uncertainty for the group. Now it’s how do we help people understand what the next six months looks like? How do we support our community if there are financial needs? How do we help our community understand the latest research that’s going on for how to care for yourself? We had a session this past Saturday with 10 plus families, specifically around going back to school. That’s a big concern for the rare disease community, but also for our patients and our parents specifically. Some of the foundation’s activities that we planned are being rewritten at this particular point, based just on the dynamics of this year. 

Management Style
Management philosophy: It’s very important for me to listen to the community, to listen to the board,  to listen to our medical advisory committee, our scientific advisory committee, and distill the needs of the community into actionable items for the foundation. One of my favorite phrases that I love is, “Life isn’t about waiting for the storm to pass but learning to dance in the rain.” It has served me well living with a child with a rare disorder. I’ve taken that to heart in regard to how I operate as president of the foundation. Our community has different issues and challenges. One APS Type 1 individual once said, “The only thing that APS Type 1 patients have in common is the will to survive.” We don’t all get the same issues as it relates to how the disorder impacts you. Somebody may get Type 1 diabetes, some may not. Some may get autoimmune hepatitis, some may not. My daughter has tubular interstitial nephritis of the kidneys, which is very rare, few have that, most don’t. The way in which the body attacks itself does not have a level of uniformity in our condition. Most of them get some level of candidiasis followed by hypoparathyroidism followed by Addison’s disease, but now that triad has been supplemented with a secondary triad that reveals the complexity of our disorder. It’s critical to stay ahead of the issues. For me, don’t get bogged down in the process and, and continue to prioritize activities that support our community.

Guiding principles for running an effective organization: Have thick skin and be nimble. You always have to stay focused on the APS Type 1 individuals in your community, the APS Type 1 parents, and then the APS Type 1 community as a whole and focus your activities to support the community as best you can.  You won’t always make the decision that makes everyone happy but focus on the decision that impacts the majority where you can…that’s probably my best guiding principle that I try to operate with.

Best way to keep your organization relevant: We have a fantastic board of volunteers from the U.S. and Canada. It’s very small. There are only six of us, but it’s important for us to actively work to understand what’s not only going on with our patient population, but also in the broader community. Information around APS Type 1 is exploding all the time and it can be overwhelming. What we try to do is chunk things down. In the rare community, whether it’s coming from Global Genes, whether we’re getting information from NORD, the National Institutes of Health, or the Immune Deficiency Foundation, we try to help to distill it down to meaningful chunks of information that provides appropriate information to our community. They rely on us because it’s difficult to be able to understand everything that’s going on. A great example for us is one of our board members, Dave Seyfert. He’s not a physician, but he’s a pretty smart dad of an APS Type 1 patient. He takes any clinical study or research paper that comes out and he reads it and tries to distill it down for a lay person. Then when we put our clinical information up online, Dave will usually put a short paragraph with it. It’s incredibly valuable to our community because sometimes you’re looking at these clinical studies and have no idea what it’s saying. Sometimes it can be scary when they’re read alone, but we try to add a little bit of an APS Type 1 spin on things for our community.

Why people like working with you: I try to have HOT conversations with people. That means honest, open and trusting. It’s a little acronym that has worked for me. I’m honest with my team. I’m incredibly open and hopefully everyone finds me trusting. People feel that sense with me that they can come to me. I’ve been the president since the start of the organization and I’m five years in. I’ve said it’s time to let somebody else take over the reins and run with it. I think the board respects me. They respect the way in which I communicate. Unfortunately, they won’t let me out. I’d like to take a back seat and let somebody else steer the organization because I think it’s always good for a fresh perspective, but, I’m honored that they continue to want me to lead the group.

Mentor: My mentor is my father.  When I started my first job out of college he said to me, “Be known for what you do, not for what you say.” A lot of the things I’ve learned from him—the hard work, the dedication, the willingness to step up and do it myself—a lot of things I’ve learned from him and being in a big family.  He’s still my mentor today.

On the Job
What inspires you: Our natural history study and the research coming out of the NIH and the incredible families that are participating in it. 

What makes you hopeful: I’m hopeful that the natural history study coming out from the NIH, as well as other critical research going on around the world will change the dynamics in this condition.   The NIH work as an example has already produced studies on the early stages of our condition to understand how to identify APS Type 1. Everybody always thought it was the triad of symptoms that was most important, but there are several other opportunities for early diagnosis. As an example, many of the children had an early rash. Nobody knew that rash was a part of the condition, but this unknown rash is something that many people that have APS Type 1 have known about. Now it’s documented and if seen at a very young age can be potentially picked up earlier by physicians.  My daughter didn’t get diagnosed until 11. Knowing what we know now could have prevented the 11 years of challenges we faced. We may not have cures yet, but we are paving the way to early diagnosis and treatment.

Best organization decision: Driving a diverse board. Our board members come from different areas of the country. They include Jennifer Orange from Canada as well Robin Finch from California and the Seyferts of Long Island NY. The board is one of the most important things to a foundation. If you do not have a functional board, you’re going to struggle. These people are a part of my family. I respect their feedback and they speak honestly. I may not like the feedback I get sometimes, but they will always give me that feedback. That’s been one of the best organizational decisions we made early on was selecting this team who do an outstanding job of leading this organization.

Hardest lesson learned: The simplest one is you can’t fix everything. When you are small and you’re operating in an ultra-rare space with limited funds and limited assets, you have to look at the greatest need and stretch your dollar for the greatest good. It’s not always the easiest thing, but probably one of the hardest lessons I’ve learned leading a foundation.

Toughest organization decision: Early on, becoming a foundation was the toughest organizational decision because in the early days I was fundraising through other rare organizations. We were getting research. I kept asking myself, “Why do I need a foundation?  I’m doing what I always wanted to do, which was to try to drive research around this condition.” I needed to get a number of people to say, “You need a foundation because once you have that foundation, this is where the organization can go.” That was the toughest decision for me to accept the fact that if we’re going to become something bigger, than we have to drive it under a foundational umbrella.

Biggest missed opportunity: We push fundraisers as much as we can and look at every opportunity as a big opportunity. We were actively after a Chan Zuckerberg grant that would have really changed the dynamic of our organization. We didn’t land it but I’m glad we gave it our best go. I can’t say we missed the opportunity because we were in the game, but it’s tough when you work small. You don’t know how you’re matching up against the bigger organizations. It would have been a great opportunity for us. It would have taken us to another level.

Like best about the job: The best experiences is seeing parents, specifically with newly diagnosed children, move from that deer-in-the-headlights look—the fear of a new diagnosis—to a parent who becomes a knowledge expert of this condition and a patient advocate for their child. That transition is probably one of the best experiences.

Like least about the job: The most challenging thing is losing an APS Type 1 family member. It’s like losing a loved one and we’ve lost dear friends along the way. It’s been very difficult for me.

Pet peeve: Living in a world of horses when you’re the zebra and knowing at times that your condition is just too complicated to treat. There are times where you run into physician apathy and it’s never a good experience. I’ve learned this through all the physicians that we’ve dealt with. You understand early on in a relationship with a physician whether they want to embark on the journey with you with a condition like APS Type 1. If they don’t you need to move on and find the amazing doctors that truly want to advocate for every patient, even the patients that really don’t fit the mold of their practice.

First choice for a new career: I work in pharma at a small company pioneering new products for hard to treat cancers. I love my other job. Someday I’d like to hang up that other hat and work full time in the rare disease community, whether it be with my foundation, or in other situations. I love oncology, which is where I work, but I truly have a passion for the rare disease community. That would be an exciting opportunity for me that hopefully I’ll be able to take advantage of down the line.

Personal Taste
Most influential book: Chasing My Cure: A Doctor’s Race to Turn Hope into Action; A Memoir by David Fajgenbaum

Favorite movie: Airplane, love slapstick humor and more recently The Greatest Showman

Favorite music
: Cure, REM, Psychedelic Furs, adult alternative

Favorite food: Anything my daughter makes. My daughter is a chef and works for Unilever as a food scientist.

Guilty pleasure: Golfing

Favorite way to spend free time: Time with my family and my extended family. I’m one of six kids. It’s always hard for us to all get together. If you got all of us together with the extended family, it’s 60 plus people. It’s a large family, but any opportunity that I can find to be together with my family, whatever component of the family, or when we all get together, those are always the special times.

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