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 Partners 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 Partners Pediatric MS Center, in collaboration with the National MS Society, strives to provide opportunities for parent and families to interact, including the following programs:
The National MS Society’s MS Connection site is a centralized way for those affected by MS, regardless of age, location & disability level, to connect with others from their smartphone or their home computer. Here you have the ability to join a “pediatric MS online group for parents” and form part of the 100+ parents that are already part of this group.
More information about the site can be found here. Interested individuals need to create an account to access the groups and begin connecting with others on the site.
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.