The Siegel Rare Neuroimmune Association is proud to announce our collaboration with Rare Genomics Institute, for an upcoming Podcast Series, Ask the Experts. Rare Genomics Institiute (RGI) is a non-profit organization that gives families afflicted by rare genetic disorders access to genome sequencing and expert analysis. RGI helps patients with orphan diseases initiate and fund personalized research projects through a dedicated crowd-funding platform and a highly selective network of leading academic scientists.
The nonprofit advocating for people with rare neuroimmune disorders. Accelerating research for a cure.
ADEM | AFM | MOGAD | NMOSD | ON | TM
Entries by SRNA
When someone we love becomes ill, the normal patterns of daily life come to a screeching halt and our focus concentrates on restoring our loved one to their maximum potential. The impact of living with a disease is much deeper than going to see a doctor, taking medications, or attending physical therapy.
I remember the first few weeks after my daughter, Erica, was diagnosed with Transverse Myelitis. I thought I was the only person in the world going through this experience. Inflammation, can’t an antibiotic take care of that? If only I had someone to sit down with me and explain the life altering change we were about to go through. Read more of Jamie McDaniel’s experience in this post!
The nominations have been judged, and Johns Hopkins Hospital has been selected as one of three finalists in the large organization category of the Key Innovator in Healthcare contest sponsored by Elsevier Inc, a world-leading provider of scientific, technical and medical information products. Vote online for Johns Hopkins Hospital to be chosen as the 2013 Key Innovator in medical information and technology involving mental health!
Lana Harder, Assistant Professor of Psychiatry, Neurology and Neurotherapeutics at UT Southwestern Medical Center, discusses the implications of TM on cognitive functioning in children. Children affected by TM often need accommodations at school based on physical limitations. Do medication, mood, and/or fatigue play a role? What are the implications for daily functioning? Read it in this post!
The University of Texas Southwestern Medical Center in Dallas, TX is hosting a Neuromyelitis Optica and Transverse Myelitis Research Symposium on Saturday, January 12, 2013. The meeting will be held from 10 am – 2 pm at UT Southwestern on North Campus in the T. Boone Pickens Auditorium located at 6001 Forest Park Road, Dallas, TX, 75390. The conference is free-of-charge and is open to any patients and families interested in gaining a greater understanding of the research being conducted and combating these diseases.
Molly Allen completed her doctoral dissertation in a clinical psychology program in Colorado. Her topic was the marital relationships of parents who have chronically ill (asthmatic) kids, compared to parents whose children are relatively healthy. She chose to focus on emotional aspects of physical illness because as a pre-adolescent her life had been affected by what turned out to be an orthopedic disorder I had been born with. Today she shares her story with our community.
Rebecca Whitney, talks about how it feels to be a mom of a child who has been diagnosed with ADEM/TM at 4 months of age and hereby inaugurates the first post of SRNA “How Moms See It” Series! What about you? What do you want to hear from other TM moms about or what do you want to talk about as it relates to caring for your child with this diagnosis? The possibilities are endless! Read more to discover what YOU can do!