Acute Flaccid Myelitis Association borne from a meeting of parents impacted by AFM…
Acute Flaccid Myelitis is a devastating condition with limited information or resources available for those who are affected. Our association advocates to spread awareness and gain public assistance for this growing affliction. Additionally, we provide support for parents, caretakers and those with symptoms of AFM.
AFMA’s June 2019 Warrior - Jahsua Tavarez
Jahsua is 6 years old and was diagnosed in July of 2018. He is unable to walk as he continues to have weakness in his legs. Because of the donations we receive, AFMA was able to assist Jahsua’s family with funding toward a Spineor Brace to reduce scoliosis. Jahsua loves science projects, art, video games and books.
The Spinecor brace is lightweight material and is worn underneath the patients’s clothing. The brace is worn 20/24 hours per day. The Spinecor brace allows for complete freedom of movement and does not interfere with any physical activity. While wearing the brace, it is equivalent to doing thousands of physical therapy repetitions a day.
Requests for the CDC
Request: Ensure timely and accurate reporting.
The CDC currently does not have an accurate count of AFM cases.
Due to lack of physician education, misdiagnosis, and possibly death from respiratory failure, cases are not submitted to the state health departments, and not reported to the CDC.
Without robust reporting and data, the CDC is unable to accurately quantify cases and can not fully understand the scope or severity of AFM.
More research and funding is needed before the next outbreak (based on current trends, in 2020.)
Request: Provide funding for research.
Which enteroviruses are the culprits of recent outbreaks, and should a vaccine be developed?
What is the mechanism by which enteroviruses cause AFM?
What genetic and environmental factors might explain why only some children exposed to the virus are paralyzed? Can this knowledge be leveraged to protect those at risk??
What treatments are effective in treating AFM in the acute phase?
What potential do stem cell therapies have in helping children with AFM?
How can post-polio syndrome be prevented?