Communities of Support Abound
By Mary Castro Summers, Director – Family TIES of Massachusetts
Living with a rare or low-incidence genetic or medical condition is complicated. Specialized support networks offer information and understanding. They also raise awareness around potential treatments, services, and research. In addition, they can offer practical guidance for emotional well-being.
The National Organization for Rare Disorders (NORD) lists over 7,000 low-incidence conditions. Many individuals with rare disorders are searching for others who understand. NORD’s website (www.rarediseases.org) is a great resource to start that search.
Family TIES of Massachusetts often assists families looking for information and peer support on rare conditions. Recently our staff was invited to support three organizations doing this work.
In July the Executive Director of the Ryan Dempster Family Foundation, Michelle Breedlove Sells, drove a brightly colored RV along the East Coast. The 22Q Mystery Tour (http://22qfamilyfoundation.org/) arrived at the Natick Mall and then Weymouth, raising awareness about 22Q Deletion Syndrome. The condition is also known as 22q11.2 Deletion, Velo-Cardio-Facial Syndrome, or VCFS. Dozens of local families came together to share knowledge and experience in support of their children. Local events were coordinated by Sells and Lisa Jennings.
In mid-October the neuronal heterotopia community came together in Waltham for the first PVNH Support and Awareness Conference (http://pvnhsupport.com/). Led by founder Yolaine Dupont of Vancouver, the group brings patients, families, interested researchers, and medical professionals together to support individuals with Periventricular Neuronal Heterotopia. The three-day event drew a dozen families and researchers from Boston and Europe. A number of local peer community contacts were also there, including Susan Welby from Epilepsy Foundation of Massachusetts and Rhode Island. Family TIES offered a conversation on Caring for the Caregiver. Lisa Jennings shared her experiences building an online support community for rare conditions. At the end of the conference, families were beginning plans for the 2015 conference in Scotland.
The Northeast PANS/PANDAS Parent Association (http://www.nepans.org/) hosted its November event in Providence. The event focused on expanding understanding of this complex medical condition. The sold-out two-day event featured several resource tables, including materials from the Federation’s community and educational projects .
Family TIES Regional Coordinators speak daily with parents and professionals to assess family needs and provide access to community programs and state agencies. The Parent-to-Parent Program directly supports parents’ emotional needs. In conversation, trained Support Parents reinforce that you are not alone in caring for your child. As parents, Family TIES of Massachusetts staff draw upon personal experience as we listen to and support your needs. We encourage you to call our toll-free line, 800-905-TIES (8437), or visit our website at https://www.massfamilyties.org/.