Born with a rare form of muscular dystrophy, Peri Finkelstein has never let her disorder define her.Instead, the 24-year-old New Yorker has used her challenges as a springboard to make the world a better place, completing 12 marathons to raise funds for charity.In January 2024, Finkelstein’s nonprofit organization — the Team Peri Foundation — exceeded the $1 million fundraising milestone for its Chai Lifeline project, which offers support to families following an illness diagnosis or trauma.FATHER CREATED A DRUG TO SAVE HIS SON FROM A RARE DISEASE, NOW OTHER FAMILIES ARE DESPERATE TO GET ITMuscular dystrophy is a group of more than 30 genetic conditions that affect the functioning of the muscles, according to Cleveland Clinic.Finkelstein’s form of the condition, called nemaline rod myopathy, causes severe muscle weakness and affects her speech and mobility. Despite her physical limitations, she was inspired to start doing marathons in 2010 when her mother and brother began running them for charity.”After watching everybody do the marathon and cheering from the sidelines, I knew that I wanted to make more of an impact,” she said during an interview with Fox News Digital. MOTHER FRANTIC TO SAVE CLINICAL TRIAL THAT COULD CURE HER DAUGHTER: ‘THE TREATMENT IS SITTING IN A FRIDGE’For the first few years, Finkelstein’s mother pushed her in a jogging stroller with all the necessary medical equipment secured to the bottom.Then, in 2016, Finkelstein decided it was time to stand up and walk a few steps over the finish line, with the help of her physical therapist and her parents.”At that moment, it felt as if I could do anything that I put my mind to,” she said. “It was a defining moment, when I realized the only person who could get in my way was myself — and that it was up to me to change my life.”‘LIQUID GOLD’ COULD BRING NEW HOPE TO MULTIPLE SCLEROSIS PATIENTS, STUDY SUGGESTS: ‘PROFOUND BENEFIT’In subsequent marathons, those initial steps turned into walking more than 1,000 steps, then a mile, and then a mile and a half, forwards and backwards across the finish line.After several years of pushing that “extra mile,” Finkelstein experienced medical challenges in 2022 that made her unable to compete.”It never dawned on me that part of my life would be over,” she said. “Once I officially lost that part of myself, I realized that I couldn’t allow this setback to get to me — I knew that I had to keep moving.”Instead of competing physically, Finkelstein now funnels her energy into her foundation’s fundraising efforts.”Since I was 8 years old, my dream was to launch a nonprofit organization of my own,” she said.”The same mindset that I used to prepare both physically and mentally for a marathon is what I carry into my daily life as an entrepreneur.”STIFF PERSON SYNDROME PATIENTS SHARE WHAT IT’S LIKE TO LIVE WITH THE RARE DISEASEThe Team Peri Foundation strives to make the world a “more connected and inclusive place for all,” Finkelstein said, with the mission to “educate others on the power of inclusion and to disrupt the stereotypical views revolving around disability.”While Finkelstein strives to stay positive and focus on her goals, she acknowledges that her day-to-day life isn’t always easy.”Not every day is all rainbows and sunshine — some days are harder than others, to the point where severe migraines, fatigue and pain keep me from doing what I have to do,” she said. THE GIRL WHO CAN’T SMILE: HOW A RARE DISORDER BECAME A YOUNG WOMAN’S ‘GREATEST GIFT’Finkelstein undergoes different forms of therapy multiple times a week, has frequent doctor’s appointments and is “always in pain,” she shared.Her social media posts highlight the highs and lows.”My hope is that by sharing bits and pieces of my world — portraying all the different sides of me, whether it’s rather dark or filled with light — I can portray that people with disabilities can live a full life and step out of line in ways that can change the course of their future,” she said. To other people living with a disabling condition, Finkelstein advises them, “Use your rareness to your advantage.””Growing up, I would give anything to blend in and become invisible, as being ‘different’ put a lot of labels on me that caused me to be bullied severely by students and teachers alike,” she said.”But as I’ve gotten older, I’ve realized it’s OK to be rare.”Life itself can be compared to the dozen marathons she has competed in, according to Finkelstein.”You have to push yourself to the limit for each mile marker, as nothing will ever come easily,” she said.”All the pain, traumas and setbacks are what enable you to keep going and keep hustling.””You have to power through the pain, because there is no other option.”Since hitting the $1 million milestone, Finkelstein and her foundation have launched new projects, including a scholarship fund in partnership with Adelphi University, where she earned her MBA in marketing.CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTERShe also works to boost awareness and education through speaking engagements, social media and podcasting, and hosts various fundraising events throughout the year.Finkelstein plans to write and publish a memoir to share her life’s journey with the world. “While I used to be an athlete, I am still just as competitive and am somewhat of an overachiever in the real world,” Finkelstein said. The entrepreneur is also acutely aware that life is short.For more Health articles, visit www.foxnews.com/health”It’s always in the back of my mind that I cannot wait to live my life — because of physical disability and medical challenges, it could be cut short,” she said.”My time is precious, and I still have a lot more to accomplish.”
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Publish date : 2024-10-08 08:30:36
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Woman with muscular dystrophy completes 12 marathons in wheelchair for charity: ‘Won’t let it define me’
