Dear New AFM Family,
We’re so sorry to hear that you have a need for this group, but glad that you have found us. Our private parents Facebook group has over 600 parents fighting for their kids. Use the search function on the page to look for posts that might be helpful or write a new post about your situation! Everyone is very supportive and there is an accumulation of knowledge.
We recognize that the early days of AFM are intense, emotional and busy. When you are ready, here are some resources and ways to participate in our community:
Join AFMA: Become a member of AFMA, subscribe to our mailing list, and access AFMA programs, advocacy efforts, and support by joining the Siegel Rare Neuroimmune Association (formerly TMA) through this link - https://wearesrna.org/join/. You may read more about our partnership here. By joining, you will be able to share details about your child's diagnosis, note your interest in research participation, and stay current on the latest information and resources available regarding AFM.
Join the CAPTURE study at UTSW led by Dr. Greenberg. Dr. Greenberg is a leader in the AFM medical community (see below). Email patricia.plumb@utsouthwestern.edu to get started.
Watch the below presentation by Dr. Greenberg at The Siegel Rare Neuroimmune Association’s 2018 Regional Rare Neuro-immune disorder symposium to hear one of the very best explanations about AFM. It is a thorough discussion that is worth the time!
Take care of yourself! Our Facebook group is filled with families that have been there and are ready to support you. If you are not comfortable with social media and would like a more discreet means of communicating, please reach out to our AFMA staff. We would be happy to speak or email with you personally to discuss concerns.
The journey through AFM is not an easy road but we are here to help in navigating your path.
