Landon Stillitano, Gabriel Novack, Jacob Scheinson and Libby Gray are about to become adults in the eyes of the Jewish religion. In honor of this milestone, they are working on a unique mitzvah (good deed) project to show their commitment to becoming responsible adults.“Completing this project will be the first time I can help my community as a responsible adult,” said Landon, an Elizabeth Place resident.For their mitzvah project, the group has organized the Fight the Flame 5K, “a time-chipped” 5K to raise money and public awareness about reflex sympathetic dystrophy/ complex regional pain syndrome, said Landon. Landon, 12, and Gabriel, 13, who have been friends since they attended the Charlotte Jewish Preschool in Shalom Park, came up with the idea to have a fundraising run/walk. The friends both like to run, and they chose to support the fight against RSD/CRPS because Landon’s mom, Beth, has been living with RSD for 17 years.“RSD is a chronic, neurological pain disorder,” said Landon. “This disease has affected not only my mom but our whole family. There are so many things my mom cannot do and that limits us to not being able to do many things.”In the late ’90s, doctors diagnosed Beth Stillitano with RSD when her pain symptoms were not consistent with a knee injury she had sustained at work.“I felt as if my knee was constantly on fire,” she said. Since the family moved to Charlotte in 2005 from Long Island, her RSD has spread to her right foot, the right side of her neck, face, right shoulder, right arm, her jaw, and her right eye, which is causing vision problems. Her sleep is disrupted as well, and she cannot sleep more than 90 minutes at a time.“My mom never tries to show that she’s in pain,” said Landon. “She always smiles no matter what. She is a very optimistic person.“We created the name ‘Fight the Flame’ because having RSD is like having your body on fire, and we are hoping to find a cure and put out the flame.” The kids’ goals are to create awareness and to raise money for the RSDSA. To date, they have raised $10,000 and have 90 registered participants, 17 sponsors, and 10 teams formed.Gabriel added that they also want to “get people with RSD to know who in their community has RSD as well.”The kids are making an impact through word of mouth, sponsorships, and radio spots.“We have had many emails/phone calls from people in Charlotte who also suffer from this disease who have felt they were all alone,” said Beth Stillitano. “Several of us have gotten together and have been helping each other.”Family members of local RSD patients are flying in for the event, and supporters in Ohio have created a virtual Fight the Flame 5K, where they are registering participants and collecting donations.“It is unbelievable to me that just a few children who have amazing hearts have been able to do so much for this dreadful disease,” said Beth Stillitano. “I am honored and feel so lucky that my children and their friends care so much about me, that they want to help.”
Friday, Oct. 18, 2013
Charlotte benefit to fight neurological pain disorder
Learn more: Fight the Flame 5K will take place at 8 a.m. Nov. 3 at McAlpine Creek Park. Participants must be 12 and older and can run or walk the course. Cost is: $25 until Oct. 25; $36 after that. All proceeds will go to the Reflex Sympathetic Dystrophy Syndrome Association to help fund research for the cure. For information: www.fighttheflame5K.org. For sponsorship enquiries, contact Beth Stillitano at email@example.com or 704-321-5608.
Marissa Brooks is a freelance writer. Have a story idea for Marissa? Email her at firstname.lastname@example.org
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