Rising Stars: Meet Allison D’Ambrosio-Bones

Today we’d like to introduce you to Allison D’Ambrosio-Bones.

Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
Thank you for the opportunity to share my family’s story. In 2018, my world was turned upside down. That March, my husband Jamie lost his battle with colorectal cancer. Over the next few months, I had to learn how to become both mother and father to our 3-year-old son Travis. I was just starting to feel like we were going to be OK, with a lot of help from an amazing group of friends and family who surrounded us with love and support. I focused on keeping life as normal as possible for Travis, and planned his 4th birthday party for August, at our local community swimming center. Almost 50 people showed up that day to celebrate Travis. That was the kind of kid he was, drawing people to him with his ever-present million-dollar megawatt smile and joy of life. He was bright, energetic, loving, and rarely sick.

 The Friday night after his party, Travis spiked a high fever. I consulted three different medical professionals, all of whom dismissed his fever and symptoms as simply a case of the flu. It wasn’t the flu, it was an undiagnosed rare disease called Isolated Congenital Asplenia (ICA). No one ever detected Travis had ICA, in which children are born without a functioning spleen, compromising their immune systems and leaving them vulnerable to life-threatening bacterial infections. It would claim Travis’ life within 20 hours of his first developing a fever. His ICA was diagnosed only by the medical examiner. When she delivered the reason why Travis died, I knew I had to do something to change how ICA can be diagnosed and hopefully save the lives of other children with ICA. It is not acceptable for a parent to have to learn from the medical examiner that their child was born without a vital part of their immune system!

Two weeks after Travis’ funeral, a friend found an article on two researchers who published a paper detailing their discovery of a genetic mutation responsible for ICA in about half the cases they studied. I connected with these doctors, sharing Travis’ story and my dream of creating a nonprofit organization to support their research and raise awareness about ICA. This is how T.E.A.M. 4 Travis (Together Ending Asplenia Mortality) got its start. We were officially recognized by the IRS as a 501(c)(3) charitable organization in March 2019. 

We focus on three areas: awareness, advocacy and supporting research on spleen development. The awareness piece targets not only the community at large, but also patients and medical providers, providing information about ICA. For advocacy, thanks to joining forces with The Everylife Foundation for Rare Diseases and their sister organization, Rare Disease Legislative Advocates (RDLA), we’ve spoken with members of US Congress about supporting key legislation that will expand Newborn Screening and provide better access to Genetic Counselors. I was a member of RDLA’s inaugural Advisory Committee, helping create training materials and guiding new advocates.  In 2022, we funded our first research grant, supporting Maurizio Risolino, PhD in the Selleri Lab at University of California, San Francisco and his work on understanding spleen development.

We’ve got so much more work to do to continue building our community of patients, families, researchers, and the medical community. It is Travis’ legacy and my role as his mother to carry out this work, sharing his story and increasing the odds for kids with ICA to have a better chance at a long life.

Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
One of the biggest challenges has been just the nature of working to support a rare disease that so many people have never even heard of. According to Jean-Laurent Casanova, MD, Ph.D. and one of the doctors on our Scientific Advisory Board (SAB), T.E.A.M. 4 Travis is the only organization in the world devoted exclusively to supporting ICA. So, we have been tasked with building something from the ground up.

To give you more background on the disease, here are a few facts: ICA is considered both a genetic birth defect and a primary immunodeficiency that occurs in approximately 1 in 300,000 births throughout the world. It is a rare disease that knows no ethnic boundaries. As another of the members of our Scientific Advisory Board, Licia Selleri, MD, PhD emphasizes, ICA is also the only known birth defect impacting the lymphoid system with no other visible anomalies.

We don’t want people to view this as just another sad story, and then walk away. We want them to take action, get involved, find out how to help spread our message about ICA and help support our work to fund the research and help develop a better diagnostic to detect a functioning spleen in all babies. Having this knowledge when Travis was born would have definitely improved his chances of survival. That’s the gift his legacy can bring to other children throughout the world.

Alright, so let’s switch gears a bit and talk business. What should we know about your work?
My work is part of my story. I founded T.E.A.M. 4 Travis (Together Ending Asplenia Mortality) in late 2018, in response to Travis’ death. As a nonprofit organization leader, have experienced sort of a “baptism by fire”, educating myself and our Board long the way. I drew on my marketing degree and my background in commercial finance to help me navigate the waters. Every day is a learning experience.

I would give anything to have never had to learn about ICA. I would give anything to still have the privilege of being a mom to a living 8-year-old boy. Since undiagnosed ICA took that privilege from me, I channel my love for Travis into doing everything I can to bring awareness to ICA and change the way this silent killer can be diagnosed.

Where do you see things going in the next 5-10 years?
Isolated Congenital Asplenia (ICA) is just one of over 10,000 known rare diseases, which impact over 30 million Americans. Half of this population are actually children. Of these 15 million children living with a rare disease, 1 in 3, like Travis, will not live to see their 5th birthday.

Alone, each family of a child living with a rare disease can feel isolated, collectively, although the individual disease may be rare, when we come together in partnership with organizations like The Everylife Foundation for Rare Diseases, Global Genes, and National Organization for Rare Diseases (NORD), we can amplify the voice of the rare patient. Together, we can do more to develop better diagnostic tools, empower collaborations between patients, medical providers and industry and speed the development of treatments. All for kids like Travis.

Contact Info:

• Website: www.team4travis.org
• Instagram: @team4travis
• Facebook: @team4travis
• Linkedin: https://www.linkedin.com/company/t-e-a-m-4-travis/
• Twitter: @team4travis