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The 1st North Carolina Walk-Run-N-Roll will be held Sunday, October 17, 2021 at the Sandra & Leon Levine Jewish Community Center in Charlotte.On-site registration and the event begin at 8:30 am.
Register ahead and start fundraising here: https://2021-nc.raisely.com/
On the event page linked above, you can select Start Fundraising to create a profile and select a shirt size. You do not have to fundraise to attend the event, but you do have to follow these steps to register.
The new registration process gives attendees the ability to write their story, upload pictures, create a team of friends and family, and share the event on social media. We think this makes the process more engaging!
Please reach out to [email protected] with any questions.
SRNA is excited for this opportunity to bring together the members of our community to share stories, experiences, and form lasting relationships all while increasing awareness of these rare neuroimmune disorders. Funds raised from events such as this allow SRNA to continue to offer educational programs (“Ask the Expert” podcasts, the Rare Neuroimmune Disorders Symposium, James T. Lubin Fellowship, and Quality of Life camp) and to support groundbreaking research.
Sarah's Story
Three days after my thirteenth birthday, my life was completely changed.
I came home from ballet class on a Tuesday night to study for tests at school the next day. My back was hurting with shooting pain at my shoulder blades. I tried my best to ignore it, and I chalked it up to new ballet moves that I had practiced earlier in the day. I remember that my leg fell asleep and I collapsed on the floor while trying to get ready for bed, and again I just told myself I was tired from ballet class.
The next morning was the scariest --- I woke up and couldn’t move or even feel my body. I was a quadriplegic. I was telling myself to get up, to move, to do anything, but nothing worked. My dad had to carry me to my pediatrician, and she was at a loss too. We went to the ER where my mom was waiting for us. I went through spinal taps, multiple MRIs, a steroid treatment, and even had my lungs checked every few hours so that the doctors could make sure that I could still breathe on my own. After about 28 different doctors and treatments over 72 hours, I was diagnosed with Transverse Myelitis.
Transverse Myelitis (TM) is inflammation of the nerve cell fibers (called myelin) in the spinal cord. Basically, this means the connection of the spinal cord nerves and the rest of the body is interrupted and stops working as it should. My lesions were in the thoracic part of the spine from approximately T2-T6, which covers the chest and abdomen areas, so nervous system signals were not making it past that spot for me. This is why I woke up and couldn’t feel my arms, legs, or anything from the chest down on October 11, 2006.
I moved into a pediatric inpatient rehabilitation hospital for about two months. My parents took turns sleeping in a chair next to my patient bed. Every day I went to three hours of physical therapy and occupational therapy. We had to start with fine motor skills, like holding silverware and buttoning buttons. I began to regain control in my hands and arms after a few days, but my legs were more stubborn. I had to work with tutors in my hospital room a few hours a week, because I was not able to attend school. My therapists spent time teaching me how to maneuver a wheelchair because we were not sure if I would ever be able to walk again.
You might not believe this is my story if you meet me now. Since onset, I have worked myself up from using a wheelchair, to getting around with a walker, to using lofstrand (around the forearm) crutches, to wearing different versions of leg braces, to now using a Bioness (e-stim brace) to help me walk. In the past 15 years since diagnosis, I have continued to attend physical therapy and to work with other doctors on some of the lingering challenges that still exist after my Transverse Myelitis diagnosis. I went back to school as soon as I could to continue my education, and I am now an elementary school teacher in Charlotte, NC.
Transverse Myelitis is difficult. I am so grateful for the incredible support team of family, friends, and specialists that I have had. I have met other TM Warriors through social media and we help each other through all situations. The Siegel Rare Neuroimmune Association (SRNA) has also been a wonderful resource for me since diagnosis. I am excited to be hosting a Walk-Run-N-Roll event in Charlotte, NC in October 2021 in honor of the 15-year anniversary of my original diagnosis. This event will help us raise awareness and research funds for TM and other rare neuroimmune disorders, demonstrate support for others going through a diagnosis right now, and it will be an opportunity for me to celebrate how far I have come since that first scary morning.
- Sarah Pritzker
COVID-19 Considerations
COVID-19 remains a significant public health concern. In order to reduce the risk of transmission of COVID-19, all events will be following CDC guidance and local rules. For outdoor activities, CDC guidance recommends individuals stay 6 feet apart, and if you can’t stay at least 6 feet apart from people who don’t live with you, wear your mask. Mask wearing reduces the risk of COVID-19 transmission. Hand washing and avoiding poorly ventilated or crowded areas are also important.
Mecklenburg County Public Health has recommendations specific to COVID-19 safety as the delta variant spreads in the community and the CDC updates guidance for vaccinated and unvaccinated individuals:
- Everyone 12 years of age and older should get vaccinated.
- All residents—vaccinated and unvaccinated—should wear a mask in public indoor settings, continue to social distance, and avoid large crowds.
- Businesses are recommended to require patrons to wear face coverings indoors.
- Everyone should continue to wash their hands often with soap and water.
- Use hand sanitizer if soap and water aren’t available.
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Event Venue & Nearby Stays
5007 Providence Rd, Charlotte, NC 28226-5849, United States
Tickets