Resources for families | Overview
If your child has just been diagnosed with multiple sclerosis (MS) or if she has a related condition, this is certainly a stressful time for your family. You are being given lots of new information and you probably have a long list of questions. All of the members of our team in the Pediatric Multiple Sclerosis and Related Disorders Program are here to help.
If your child has MS, we will give you a binder that contains information about the disease and resources at Boston Children’s and in the community. It also has lots of pages where you can store information about your child’s treatment and jot down notes and questions.
You may want to visit the Hale Family Center for Families at Boston Children’s, which has several helpful books about MS. Its website offers information on the wide array of support services available to families at Boston Children’s.
The websites of these organizations may also be helpful to you:
Please note that neither Boston Children’s Hospital nor the Pediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below.
The National Multiple Sclerosis Society and its state chapters offer programs and services to help people with MS and their families, advocate for the needs of people with MS, facilitate professional education and fund research.
The Kelly Packowski MS Foundation offers direct support to patients and families in New England who are affected by MS. This organization also provides support to our Pediatric Multiple Sclerosis and Related Disorders Program at Boston Children’s.
The Guthy-Jackson Charitable Foundation was established in 2008 when Victoria Jackson's teenage daughter was first diagnosed with Neuromyelitis Optica (NMO), a life-threatening autoimmune disease. At a time when so little was known about this rare “orphan” disorder, and when there were no existing foundations focused on solving NMO, Victoria Jackson dedicated herself to funding basic and clinical research desperately needed to better understand, treat and ultimately cure this devastating disease.
The Siegel Rare Neuroimmune Association, formerly the Transverse Myelitis Association (TMA), is a not-for-profit international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuro-immune disorders including acute disseminated encephalomyelitis (ADEM), MOG antibody-associated disease (MOG-Ab disease), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM), including acute flaccid myelitis (AFM).
Founded in 1994 by family members and individuals with these diagnoses, the TMA was incorporated on November 25, 1996, in the state of Washington and it became a 501(c)(3) organization on December 9, 1996.