Moorestown High student Advait Wattal was inspired to create Aware4Rare by how one patient lived with a rare illness.
Advait Wattal got an opportunity last summer to perform research at the University of Pennsylvania’s Genetic Diagnostic Laboratory, leading to something big for the rising Moorestown High School senior.
The facility is a nonprofit clinical lab whose mission is to evaluate an individual’s DNA to discover a genetic cause for their disease or physical symptoms; provide interpretation of the genetic finding and its association with disease; develop new methods for analyzing genes; and introduce new testing to improve patient care, according to the lab’s website at www.med.upenn.edu.
“What I got to see was the behind the scenes – where the lab PI (principal investigator), the person who runs the lab – would always talk about, ‘How can we cut down the cost for this patient?’” Wattal recalled. “Or maybe even, ‘How could we make it free for this patient?’ Just simply because they couldn’t afford the testing. But of course she (the P.I.) knew that they still needed it to get the treatment that they would need to live a healthy life with their disease.
“If you don’t get the testing, the treatment is not covered by insurance,” he added. “It has to be proved that you have the disease through genetic testing, otherwise you simply will not be covered. That really made me wonder, why is there that disparity? Why can’t so many people not afford this treatment? And then I started looking into it more.”
But the story continues. Wattal also attended a lecture at Penn Medicine from a patient who was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), a rare muskuloskeletal condition where, after birth and progressively through life, muscles and tendons are gradually transformed into bone, a process called ossification. That creates a second “skeleton” of extra bone, which makes movement impossible, according to the Penn website.
The patient’s story of how he was able to live with FOP surrounded by the best medical care was a second component to Wattal founding his organization – Aware4Rare.
“One of the main problems that I see that I’m very passionate about is unequal access to affordable health care,” he noted. “Because I personally feel like health care is a basic need for everyone and that everyone should have access to it.
“How can we make sure that people who suffer from all these rare diseases and regular diseases have that coverage and they can get the best care that they need to live a healthy life?”
Aware4Rare’s mission is to raise awareness for those struggling with rare diseases and donate funds to the National Organization for Rare Disorders (NORD), a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease and their families live their best lives.
“Our hope is to financially contribute in order to combat the societal pathologies that lead to rare diseases,” Wattal explained. “Our slogan is, ‘Let’s make diseases exactly that: rare.’”
Aware4Rare’s inaugural fundraiser – 50-miles for Rare Diseases – is expected to be an event in association with NORD where Wattal and students from Moorestown High will participate in a run that will be livestreamed and documented on Instagram. Members of the community are welcome to participate; the event will be held from 9 a.m. to 4 p.m. on Sunday, Sept. 8. A location has yet to be determined.
“As a kid, you don’t feel like you can really do a lot …” Wattel acknowledged. “But really just (hearing) all these patients’ stories and working in these labs and talking to all these people who have honestly dedicated their lives to helping other people with rare diseases – whether that be through research or getting them testing or treating them – it really inspired me to try to do whatever I could to help them.
“ … Even as a kid, you’ve just got to try your best and see what you can do if you really are passionate about something.”
To donate to Aware4Rare’s inaugural fundraiser, visit https://donate.rarediseases.org/fundraiser/5642542.
