We're gaining momentum for real AFM awareness.
The take action community met with representatives from Congress and members of the CDC…
Ready to raise your voice? Help us by sharing the letter below with your elected official to request resources be allocated to AFM research and information.
Dear Senator/Representative ______,
I write regarding Acute Flaccid Myelitis, an emerging disease similar to polio.
You may know that the United States celebrated World Polio Day on October 24, marking 27 years without a case of polio in the Americas. While we appreciate the tremendous effort health care officials have made to eradicate this terrible disease, we are concerned about an emerging disease that presents itself identically to polio.
Acute Flaccid Myelitis (AFM) is a paralyzing syndrome likely caused by enteroviruses, the same type of virus that causes polio. Damage to the spinal cord leads to weakness and paralysis in one or more limbs and can affect breathing, arms or legs. This disease primarily affects children, and the severity and scope falls across a wide spectrum. Some children have only one limb affected, while others are quadriplegic and rely on a ventilator to breathe. Two children have died within the past six months from AFM-related complications.
I am concerned about the response of public health officials to the outbreak of AFM. Too often, children present with limb weakness and are sent home, losing precious treatment time as their spinal cords are damaged. I believe the Centers for Disease Control and Prevention (CDC) should develop an education campaign to inform physicians about early warning signs and symptoms so that treatment can begin and AFM’s destructive effects can be limited. I also believe that the CDC should work with the National Institutes of Health (NIH) to ensure that controlled studies on interventions and treatments in the acute phase and beyond are conducted to improve outcomes for affected children.
Specifically, I respectfully request your assistance in getting responses from the CDC and the NIH to the following questions:
How is the CDC communicating about AFM to physicians?
What is being done to ensure timely and accurate reporting of AFM cases?
How are these cases being tracked long-term to identify future potential complications from AFM?
What research is being done to identify successful acute phase treatments?
How can stem cell therapies in the spinal cord be used to help children regain function?
I am grateful for your support for ensuring healthy futures for the children of this country. Just as children and parents no longer fear the traumatic outcomes of polio, a swift and aggressive response to AFM will minimize the lives affected by this heartbreaking disease. Thank you for your time and attention to this matter.
Sincerely,
YOUR NAME HERE
