An Audiologist’s Personal Crusade
If you’ve worked with Dr. Fligor at our practice, you may already know a few things about him. You may be aware that he has four kids, that he’s from Ohio, or maybe that he holds a degree in biomedical engineering and a Ph.D. in Audiology from Boston University. Maybe you’ve really done your research and know that he has written a book— Understanding Childhood Hearing Loss (Rowman & Littlefield, Oct 2015). Perhaps it’s news to you that he is an adjunct audiology faculty member at Salus University and a consultant to the World Health Organization.
Clearly a busy man, Dr. Fligor still makes time for a cause that is very dear to his heart. As an audiologist and a key member of the original team of doctors at Boston Children’s Hospital from 2007 to 2010, Dr. Fligor played a pivotal role in putting to trial the first drug to treat Progeria, an exceptionally rare and fatal syndrome that causes rapid aging. Dr. Fligor considers it his personal mission to bring attention to this disease through his work with the Progeria Research Foundation (PRF).
What is Progeria?
Progeria, officially known as Hutchinson-Gilford Progeria syndrome (HGPS), is an extremely rare genetic disorder, characterized by premature accelerated aging in children. The condition affects approximately 1 in 20 million live births, making it an exceptionally uncommon and challenging ailment.
A study available from the National Institute of Health states that while “it is standard for a child’s motor and mental development to be normal,” it’s their physical state that is affected. Children with Progeria have abnormally prominent eyes, a narrow nasal bridge, a disproportionately small face compared to the head, a small jaw, malformation, and crowding of the teeth. The additional, devastating symptoms come between the ages of 6 and 20, when death is likely to occur primarily due to stroke or heart failure.
PRF serves as a beacon of hope for those struggling with this condition, aiming to accelerate research and improve the quality of life for individuals affected by the disease.
The Mission of the Progeria Research Foundation
The foundation’s aim is to discover treatments and, ultimately, a cure for Progeria. Founded by Dr. Leslie Gordon and Dr. Scott Berns, the organization has been relentless in its pursuit of groundbreaking research. Dr. Gordon and Dr. Berns were driven to create PRF for a very personal reason. Their own son, Sam, was diagnosed with Progeria at 22 months old.
Follow this link to more about Sam’s story, and other children who have walked a similar path. His story was also covered in an HBO documentary and in a TEDx talk.
Dr. Gordon and Dr. Berns recognized quickly that there was a huge lack of medical information and resources regarding Progeria. They were faced with the fact that there was no one place to figure out the complexities of Progeria. There was nowhere for their doctors to turn for information. Additionally, there wasn’t anywhere for scientists to apply for funding to research the disease.
All these challenges inspired them, their friends, and fellow medical professionals to launch PRF. It’s the only nonprofit organization in the world dedicated to the research of Progeria. The focus of PRF reaches beyond the laboratory, encompassing a holistic approach that includes raising awareness, providing support to affected families, and fostering a sense of community.
Missions Aligned: The Boston Children’s Hospital Trials and the First Drug
As an audiologist, Dr. Fligor is passionate about bettering people’s lives through health care. Seeing as the advancements made through PRF directly contribute to improving the quality of life for those affected by this rare condition, Dr. Fligor’s work with Progeria aligns perfectly with their mission.
Dr. Fligor’s journey with Progeria began during his tenure at Boston Children’s Hospital, where he trialed the first Progeria drug. Before this groundbreaking drug came about, children with Progeria were expected to live a short 14 years. Additionally, children with Progeria develop progressive hearing loss, secondary to stiffening of the connective tissue in their eardrums and middle-ear. The results of the drug that Dr. Fligor and his team tested marked a paradigm shift, providing an amazing 20% increase and thus raising the life expectancy of a child with Progeria to 17 years. Their hearing loss stopped progressing and, in a few cases, reversed.
The success of the initial drug trials has functioned as a springboard, evolving the treatment landscape for Progeria. Today’s children with Progeria receive a carefully curated cocktail of drugs, extending their life expectancy to 21 years. The more exciting news is that these additional years are marked by improved health, increased activity levels, and an overall better quality of life.
Dr. Fligor believes that we cannot stop at 21 years. Beyond his role in the early trials, Dr. Fligor continues to support PRF in its ongoing efforts. His commitment will not waver until much, MUCH more progress is made.
Feeling inspired by Dr. Fligor’s story and the mission of PRF? Good news! There are numerous ways to get involved. Donations, fundraising events, and spreading awareness on social media platforms are powerful ways to contribute to the ongoing research and support for families affected by Progeria.
Want to help Dr. Fligor fight Progeria as soon as April? He is taking his crusade against Progeria to the streets. He’s putting his sneakers where his mouth is and running the Boston Marathon on April 15 — to raise money for PRF. He’s aiming to raise $15,000 to donate to this worthy cause. Visit his fundraising page here.
The Progeria Research Foundation’s website serves as a hub for information, resources, and avenues for involvement.
Dr. Brian Fligor and the foundation’s shared mission to combat Progeria has not only extended the life expectancy of affected children but has also transformed those years into a period of improved health and vitality. It’s inspiring that, through collective efforts and unwavering commitment, we can make a profound impact on the lives of those facing rare and challenging conditions like Progeria.
Want to help Dr. Fligor fight Progeria?
Visit his fundraising page to learn more.