TS Alliance of New England
Serves the states of Maine, Massachusetts, New Hampshire, and Vermont.
Click here for a description of our Community Alliance program.
The TS Alliance of New England is a group of TSC individuals, families, healthcare providers, board members, and volunteers. This group is led by volunteer leadership dedicated to furthering the mission of the TS Alliance in their local state(s) or region by dedicating themselves to finding a cure for TSC and improving the lives of those affected.
Name: Allyson D’Amario
City, State: Holliston, MA
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: I’m a wife and mom to Charlotte and Henry. Our daughter was diagnosed with Tuberous Sclerosis as a baby in April 2011. After a few months of settling in to our new normal, we started to connect with the TSC community through fundraising walks and social events. I never imagined myself becoming involved with the TS Alliance, but before I knew it my husband and I were advocating for New England families and helping them stay informed about research and services. I’ve also been fortunate enough to participate in March on the Hill, the Alliance’s government outreach program. It’s empowering to honor Charlotte by helping my fellow TSC families.
This position is currently open. If you are interested in the Vice Chair position, please click here for a position description and/or to apply.
Step Forward to Cure TSC Walk Chair
Name: Stacie Verrill
City, State: Effingham, NH
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: My name is Stacie Verrill and I am from Effingham, NH. My husband and I are the proud parents of a 14 year old beautiful daughter. Cynthia Lee was diagnosed with TSC at 3 months. She has seizures and is non-verbal.
This will be my 5th year chairing the New England Walk in Auburndale, MA.
Other public services I am involved in is a fundraiser titled “Cynthia’s Challenge”. This is a 24 hour ski-a-thon that raises money for a local family in need. We have raised over $131,000.00 over the last three years. We have purchased one service dog and two handicapped accessible vans.
Adult Regional Coordinator
Adult Regional Coordinators act as the connection for adults diagnosed with TSC to connect with other adults within their region. They will be knowledgeable about resources, events, support meetings, conferences and any new research on TSC that pertains to adults with TSC. They provide support to the Community Alliances in their region in developing a welcoming and inviting atmosphere for adults with TSC in order to promote adult involvement and support within the Community Alliance.
Adult Regional Coordinator, Region 7
States served: CT, VT, ME, RI, NH, NY, MA
Name: Scott Moskowitz
City, State: NY
Other volunteer positions held in addition to Adult Regional Coordinator: None
Connection to TSC: Adult with TSC
Dependent Adult Transition Resource Coordinator
Dependent Adult Transition Resource Coordinators are knowledgeable in state resources, events, support meetings, conferences, and any new research on TSC that pertains to dependent adults and transitioning young adults with TSC and their caregiver. The Dependent Adult Transition Resource Coordinator will work collaboratively with their Community Alliance(s) in supporting and connecting dependent adults, transitioning young adults, and their caregivers to state resources.
This position is currently open. If you are interested in the Dependent Adult Transition Resource Coordinator position, please click here for a position description and/or to apply.
Find a local TSC Clinic
To find the TSC Clinic nearest to you, visit the TSC Clinic page.
Visit www.StepForwardtoCureTSC.org to find a walk nearest to you.
Don’t Miss Any Updates!
Click here to join the mailing list for the TS Alliance of New England and be notified of all upcoming events.
You can also visit us on Facebook to receive the latest Community Alliance updates!
If you would like connect with other TSC individuals or family members in your state via phone or email, visit our TSC Connect page to find a list of individuals in your state that you can contact any time.