Can the FPIES Moms Save the Miso Children?
The fight for children with a rare disease is joined
Posted Aug 25, 2014
Just when it seemed the miso mom cavalry was feeling outmatched by our rare disease, the sturdier FPIES (Food Protein-Induced Enterocolitis Syndrome) moms are riding in with technological reinforcements to help out children with misophonia.
This Wednesday, August 27, The FPIES Foundation will be co-sponsoring a Webinar entitled “Advocating for your Child in the Healthcare System.” FPIES is the perfect model for a children’s misophonia non-profit, as far as I am concerned, because it is also a rare disorder that can wreak emotional havoc on youngsters and their families.
Here is a brief description of the program, which should prove helpful to parents of children with misophonia as well:
“The purpose of this webinar is to help families navigate the healthcare system by providing advocacy actions, tools, and resources to assist them, and their providers, as they care for their children living with FPIES.”
According the FPIES Foundation, the one-hour webinar, which will be recorded for those who can’t view it live, promises to teach several important rare disease advocacy skills that should also prove valuable to moms, dads and other relatives interested in misophonia advocacy. These include training in the tools available for advocacy efforts, how to successfully coordinate care for rare disorder children, and most important of of all, strategies for empowering miso kids who might be too sensitive and shy to stand up to school bullies.
The webinar’s two presenters, Nichole Huff and Abby Brogan, are not only experts on the topic, but have a personal connection to it, as well.
Dr. Huff is an assistant professor at North Carolina State University, and parent of a son with FPIES. She has a Ph.D. in Family Sciences, a M.S. in Marriage and Family Therapy, and is a Certified Family Life Educator (CFLE) with the National Council on Family Relations. She also has a Twitter following: @soapboxmommy.
Ms. Brogan is the mother of 8-year-old child on home nutrition support due to a digestive disease called short bowel syndrome. She is also the Outreach Coordinator for ThriveRx, a company that offers treatment options to children with her son’s disorder. It is a division of BioRx, a relatively new specialty pharmacy that coordinates with pharmaceutical manufacturers and insurance companies to supply infusion therapies to patient populations with rare nutrition and digestive disorders.
I have faith that the miso moms will be capable of organizing a webinar just like this for their misophonia children one day soon. And further, just like the FPIES moms are now doing, I’m sure they will one day be able to launch a similar Patient Global Registry, bringing young misophonia sufferers together with doctors and researchers interested in learning more about a our disorder.
Something like this would positively give the miso mom cavalry all the reinforcements they would need to win the Battle at Little Misophonia.