We are excited to collaborate with the newly formed Acute Flaccid Myelitis Association (AFMA) to advance our joint goals to support families affected by rare neuroimmune disorders, specifically Acute Flaccid Myelitis (AFM). The AFMA was borne from a meeting of parents impacted by AFM and advocates to increase awareness and gain public assistance for this disorder. The AFMA provides support for parents, caregivers, and those with AFM.
We at SRNA look forward to partnering with the AFMA to ensure the education, advocacy and research resources we offer meet the needs of the AFM community. We also hope to expand and offer more AFM-specific resources jointly as co-branded documents under this partnership. As part of our partnership, AFM families can become members of the AFMA and SRNA through the SRNA membership form by selecting to give permission to share information with both organizations and participate and benefit from programs offered by SRNA and the AFMA.
Chitra Krishnan, the Executive Director of SRNA, remarked, “By joining forces, and working together, we can achieve so much in raising awareness, improving education, resources, support, and research so we can improve the quality of life of families affected by AFM.”
Director for AFMA, Katie Bustamante, also noted, “We look forward to this partnership with the hope that our combined efforts will have a growing impact on public awareness, advocacy, and support for those affected by Acute Flaccid Myelitis.”
About The Siegel Rare Neuroimmune Association
SRNA was founded 25 years ago by families of loved ones affected by rare neuroimmune disorders. We advocate for, support and educate individuals and their families diagnosed with a spectrum of related rare neuroimmune disorders – acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis and transverse myelitis. We invest in scientific research, therapy development and training of clinician-scientists dedicated to these disorders. We have over 13,000 members and are active in 111 countries. We offer an up-to-date accurate website, resource library of over 300 publications, a patient registry, “Ask the Expert” podcasts, education symposia, the Myelitis Helpline, Quality of Life Family camps, clinician-scientist training Fellowship and a support group network. SRNA is a registered nonprofit organization recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit organization with a Guidestar Silver Seal of Transparency.
About The Acute Flaccid Myelitis Association
The Acute Flaccid Myelitis Association was borne from a meeting of parents impacted by AFM. The AFMA is a resource for those that are personally affected by AFM. We provide shared information based on the experiences and treatments that families have faced as well as grants to patients in need of financial assistance for medical treatment. Additionally, the AFMA works to increase public awareness to this rising public health issue in an effort to promote advocacy for research. The AFMA is a 501(c)(3) registered non-profit association.