TS Alliance of New York/New Jersey

EST. 2002

Click here for a description of our Community Alliance program.

The TS Alliance of New York/New Jersey 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.

Volunteer Leadership

Co-Chair

Laura MarksName: Laura Marks
City, State: Forest Hills, NY
Phone: (646) 883-4TSC (4872)
Email: TSCMamaNYC@gmail.com
Other volunteer positions held in addition to Chair: None
Short Bio and connection to TSC: Laura Marks lives in Queens, NY, with her husband and two children, including a son born in 2006 and diagnosed with TSC at age 3. She is an advocate for increased funding for TSC research and, along with her extended family and friends, an active participant in the annual Step Forward to Cure TSC event in Wantagh, NY, since 2010. Laura is executive director of the Louis and Nancy Hatch Dupree Foundation, a nonprofit organization that raises funds and awareness for the Afghanistan Centre at Kabul University, a library and research center. An expert in nonprofit management and administration, Laura has worked with human rights and humanitarian organizations for more than 20 years.

Co-Chair

Name: Rhiannon Schade
Phone: 908-295-3867
Email: rhiannon.schade@gmail.com

Short Bio and connection to TSC: Rhiannon had never heard of TSC until September 2015 when her then five-month old daughter started experiencing infantile spasms. Six months later, genetic testing revealed a TSC2 mutation in her daughter, but also in her. That is when Rhiannon began writing to members of Congress to advocate for increased funding for TSC research, participating in the New Jersey walk, and helping newly diagnosed families learn about the TSC Consensus Guidelines for patient care. Rhiannon is the director of college counseling at Collegewise of Millburn where she guides high school students (and their parents) through the college admissions process. She is excited to bring her background as a counselor, an educator, and an advocate to this role.

Vice Chair

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

Long Island Walk
Name: Carol Ann White
City, State: Lake Grove, NY
Phone: (631) 942-1326
Email: Carolannwhite2@gmail.com
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: Parent

Syracuse Walk
Name: Bridget Langstaff
City, State: Baldwinsville, NY
Phone: (315) 935-6465
Email: bclangstaff@mac.com
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: Parent

New Jersey Walk
Name: Tresha Bisang
City, State: Oak Ridge, NJ
Phone: 714-925-7797
Email: Jersey4424@yahoo.com
Other volunteer positions held in addition to Walk Chair: None
Connection to TSC: Friend

Regional Leadership

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, NJ, MA

Name: Scott Moskowitz
City, State: NY
Phone: 516-535-9105
Email: scotttsc01@gmail.com
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.

Upcoming Events

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 York/New Jersey 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.

October 14 Transition Workshop Resources

The Tuberous Sclerosis Alliance, in collaboration with the Child Neurology FoundationMass Mutual and The Arc, hosted a Transition Workshops in New York, NY, on October 14, 2017 to address common challenges adolescents with TSC face as they transition to adulthood. Topics included navigating the healthcare system, post-primary education options, understanding what living options (independent, semi-dependent, dependent) are available, guardianship and financial planning.

  1. Welcome
  2. Medical Transition and Toolkit presented by Rebecca Schultz, PhD, RN, CPNP
  3. Educational Issues and Transition to Community presented by Dena Hook
  4. Social, Housing and Employment Opportunities presented by Deanna M. Eble, Esq