skip to Main Content
           

Parents of children and teens with MS have the difficult task of helping to manage their child’s illness while keeping family life going.  They must continue to address the needs of other children and family members, continue family traditions, and keep up at their jobs and other responsibilities.  Parents must also make sure to take care of themselves, in the context of concern about their child. The Mass General Brigham Pediatric MS Center strives to provide support to parents and families, as well as assisting them to connect with sources of support in their communities.  Since pediatric MS is relatively uncommon, parents of other children and teens with MS can be excellent sources of support for each other.  The Mass General Brigham Pediatric MS Center, in collaboration  with the National MS Society, strives to provide opportunities for parent and families to interact, including the following programs:

MS Navigators

The National MS Society’s MS Navigators are highly skilled, compassionate professionals who can connect you to the information, resources and support needed to move your life forward. These supportive partners help navigate the challenges of MS unique to your situation.

More information about the site can be found here. You can also call 1-800-344-4867 or contact them here.

The Guthy-Jackson Charitable Foundation
The Guthy-Jackson Charitable Foundation is dedicated to funding NMO-SD research. On their website you can find information about the Foundation, NMO and NMO resources, as well as how to get involved.

The Sumaira Foundation for NMO
The Sumaira Foundation is dedicated to generating global awareness of NMO-SD, fundraising to help find a cure, and creating a community of support for patients and their caregivers. The foundation also addresses MOG antibody associated disorders.

International Pediatric MS Study Group
The IPMSSG website contains information about MS and other inflammatory demyelinating disorders of the central nervous system, research, and events.

United States Network of Pediatric Multiple Sclerosis Centers
On the NPMSC website you can learn more about the Network and the numerous Clinical Centers that compose it as well as ongoing projects and publications by Network investigators.

Other Resources from the National MS Society

Kids Get MS Too: A Handbook for Parents Whose Child or Teen has MS. You’ve just heard that your child has MS. We’re here to help you learn about MS so you can feel confident in helping your child take charge of his or her life.

También Hay Niños con Esclerosis Múltiple: Guía Para Padres De Un Niño o Adolescente Con Esclerosis Múltiple. Acaba de enterarse de que su hijo tiene esclerosis múltiple. Estamos aquí para ayudarlo a aprender sobre la esclerosis múltiple para que así pueda sentirse seguro al ayudar a su hijo a controlar esta enfermedad.

Pediatric-Onset Multiple Sclerosis: Unique Features and Important Considerations. A collaborative webinar from the National MS Society and Can Do MS featuring Anusha Yeshokumar, MD and James Sumowski, PhD of the Icahn School of Medicine at Mount Sinai.

También Hay Niños con Esclerosis Múltiple: Guía Para Padres De Un Niño o Adolescente Con Esclerosis Múltiple. Acaba de enterarse de que su hijo tiene esclerosis múltiple. Estamos aquí para ayudarlo a aprender sobre la esclerosis múltiple para que así pueda sentirse seguro al ayudar a su hijo a controlar esta enfermedad.

Growing up fast: Teens with MS face a unique set of challenges. Momentum Article.

Ready, Set, Go! How to Keep Kids With MS Active. Health Central article.

<

p>

Back To Top
Search