Rare Leader: Allison (D’Ambrosio) Bones, President and CEO, T.E.A.M. Travis

The Basics
Name: Allison (D’Ambrosio) Bones

Title: President and CEO

Organization: T.E.A.M. 4 Travis

Social Media Links:

Disease focus: Isolated congenital asplenia, or ICA, is a birth defect in which there is no spleen, there is only part of a spleen (splenic remnant), or there is a spleen, but it does not function. There are no other developmental abnormalities, making detection even more difficult. While rare, isolated congenital asplenia is a serious and potentially fatal disease as it impacts the spleen, a key component in our immune system. Without a spleen, a bacterial infection could be life threatening to a newborn or child.

Headquarters: Litchfield Park, Arizona

How did you become involved in rare disease: I became involved by default. It is not a path I would have ever chosen. Travis was my 4-year-old son and he appeared perfectly healthy. He was always strong, smart, and active, and he was rarely sick. One day in August of 2018, just days after his fourth birthday, he developed a high fever and three different medical providers looked at him or did telehealth with us. Every one of them dismissed it simply as the flu. Travis died the next day. It was only discovered by the medical examiner during the autopsy that Travis had this rare disease that no one had ever diagnosed. The medical examiner asked me if Travis ever had any surgeries? And I had been asked that three or four times and the answer was “no.” When she confirmed it again, she said, well, if he never had his spleen surgically removed, it means he has this rare disease called isolated congenital asplenia because he has no spleen. It’s a primary immunodeficiency. It compromised his immune system and left him without defenses against certain bacterial infections. He developed sepsis and was gone within 20 hours of first spiking a fever.

Previous career: Account manager at financial services company

Education: BBA in marketing from Baylor University

The Organization
Organization’s mission: Our mission is simple. It’s to prevent childhood death from isolated congenital ICA.

Organization’s strategy: We focus on awareness and education. We take every opportunity we can to tell people about this disease and to let them know how important the spleen is. We also are supportive of expanded newborn screening in the hopes that by the time we have a more concrete, genetic reason for the disease, that we can find a way to get screening for the spleen added to either the federal Recommended Uniform Screening Panel or even a prenatal ultrasound.

Funding strategy: Well, right now that’s probably one area where, like many rare disease organizations, we always feel like we need more help and more funding. We’ve applied and received a few grants in our short history. We held our first, successful, in-person fundraiser last fall. It was a golf tournament at Top Golf. That proved to be very successful, and our local Phoenix-area friends and families loved it. People want to do it again this year.

What’s changing at your organization in the next year: I would say continuing to grow as we share our message with the world. One thing that I think is a change is that we’re getting out there again and participating in more in-person events and seeking collaborations with other rare diseases organizations where, even though they might not be researching the same rare disease, maybe there is a similarity in the genetic mutations of the two diseases. So that’s one big change.

Management Style
Management philosophy: I’ve always liked the quote “success breed success.” I find that to be true. More achievements help you gain momentum and gain traction and credibility within the rare community, and also attract people outside of the rare community to you. One of my favorite movies is A Bronx Tale. When the young Calogero was getting in trouble at the dinner table and his parents asked him why he did what he did, he says, “I took a shot.” And that’s my personal management philosophy. If you don’t take the shot, you’re definitely going to miss. Even if you strike out, can you learn something from a shot taken, but not landed?

Guiding principles for running an effective organization: A couple years ago, as an organization, we completed a strategic plan. It was pretty easy for our board members to come to consensus on some key values that help us stay mission focused. Obviously, integrity, respect, trust, accountability, staying focused on the mission, innovation, and community. Those first six values help us to build that community and to be seen as a trusted partner and friend of the rare disease community, which I have to say is one of the most welcoming groups I’ve ever experienced.

Best way to keep your organization relevant: Stay connected to and involved with the rare disease community and always keep looking for answers, building those relationships and pursuing solutions. Sometimes I call it “going down the rabbit hole,” but sometimes that can be most productive because it’s in the rabbit hole that you discover things that you never even thought of.

Why people like working with you: I don’t know if this is a strength or weakness, but I’ve been known to wear my heart on my sleeve. I think when people see the passion I have for making sure that Travis’ voice continues in this world and his story continues to help people, I think that draws people to us.

Mentor: There are so many, but one person I’m always grateful for, and it’s been quite a few years, but my high school English teacher. She was a friend of the family, but she was also this passionate Italian woman who never accepted mediocrity. If I turned in a paper and my writing style wasn’t up to what she had come to set as a standard for me, boy, would she let me know. I am so grateful to her because that writing style has made it easy for me in later life to prepare speeches and presentations. It’s enabled me to be a very effective communicator.

On the Job
What inspires you: Travis inspires me. He was this brilliant ball of energy and light and happiness. Every child is so special to their parents. What made Travis unique was he was such a people magnet. He always had this megawatt smile and people were just drawn to him wherever we went. Even though he was this little 3-year-old kid, he was entertaining people and making them laugh and telling jokes. It’s my job as his mom to continue shining that brilliant light into this world since he’s not here to accomplish great things. I feel I’m the one who has to help his legacy by making the world a better place for children living with rare diseases like he did.

What makes you hopeful: The ever-changing medical research landscape makes me hopeful. The advances in rare disease research and in rare disease community building just in the three short years I have been involved. That’s what gives me hope.

Best organization decision: I would probably have to say having the courage to start this organization. We didn’t know what we were doing, and I think that can be one of the hardest lessons we’ve had to learn. It’s been a baptism by fire. Nobody else was launching a nonprofit organization dedicated to isolated congenital asplenia.

Hardest lesson learned: You can’t always assume the best in people. I’ve met many, many great people, but I’ve also encountered a few who I feel like they’ve been put in my place as a test and to teach me something about myself that maybe I didn’t want to face.

Toughest organization decision: Again, starting this. We had some naysayers. We had a couple of people who doubted our ability to even get off the ground. They said, “It’s a rare disease. It doesn’t really matter.” But it does matter.

Biggest missed opportunity: The biggest missed opportunity relates to resources—not just financial resources, but how do we grow? How do we attract the right people who are believers in our mission? Trying to fit that proverbial square peg into the round hole in terms of maybe a person who wasn’t the right fit to get involved in our organization.

Like best about the job: An opportunity to do something that I’m really passionate about and to give people hope and to give me a purpose that draws people to me because it would be easy with this compound grief to sit around and do nothing. That wouldn’t allow me to continue being Travis’ mom.

Like least about the job: What I like least is the uncertainty. The fact that there’s really no roadmap. For someone who tends to be a bit of a type A personality like me, having to create my own roadmap, and the fears and worries about the longevity of the organization.

Pet peeve: Things that move too slow. I am very, very impatient. My lack of patience is something that I try to constantly work on.

First choice for a new career: Travel agent

Personal Taste
Most influential book: The Bible. It’s got everything. It’s got intrigue. it’s got history. It’s given me comfort in the darkness and helped me to forge new connections with people through Bible studies. It gives me inspiration.

Favorite movie: This is an oldie and most of the audience probably never have heard of this movie, but Giant. It’s a 1956 epic about a Texas cattle rancher with Rock Hudson, Elizabeth Taylor, and James Dean.

Favorite music: I’m laughing because my playlist is all over the map. I like everything from Sinatra and Dean Martin to 80’s to outlaw country to, but the short answer is I have one singular favorite artist and that’s Waylon Jennings, the Original Outlaws.

Favorite food: Italian. My dad was Italian and so many of my family memories revolve around Italian food. It’s the cuisine that links me to my father, to celebrations, and to the heritage that I was passing on to Travis. That little boy could twirl spaghetti like nobody’s business. He was perfect. Even adults struggle, but he could get that spaghetti on that fork in a perfect tight little circle at three.

Guilty pleasure: Keeping with the Italian food theme—cannoli

Favorite way to spend free time: Cooking and dreaming about travel adventures—both reliving the memories of trips I’ve had and taking new ones.