The TS Alliance of New England includes members in the states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island and Vermont.
Co-Chairs: Marlo Schepper Grolnic and Khaled Barazi
Co-Vice Chairs: Jeffrey J. Hargreaves and Karin Sullivan
Step Forward to Cure TSC Chair: Stacie Verrill, kscverrill@gmail.com
Adult Initiative Coordinator: Katie King, kfordking@comcast.net
Download the TS Alliance of New England Spring 2012 Newsletter.
For more information on current and upcoming activities in New England or to get involved, please contact Marlo at marloschepper@gmail.com or Khaled at khaledbarazi@yahoo.com.
Join the TS Alliance of New England on Facebook.
To view the homepage for the TSC Clinic at Children's Hospital, Boston, click here.
To view the homepage for the TSC clinic at Mass General Hospital for Children, click here.
To view the homepage for The Carol and James Herscot Center for TSC, click here.
Saturday, February 25, 2012: Please join us for a Valentine’s Day Lunch from 11:00 am – 2:00 pm. Relax, have fun and make connections with other individuals and families living with TSC. The lunch will be held at The Holiday Inn (formerly the Taunton Inn and Conference Center) located at 700 Myles Standish Boulevard, Taunton, MA 02780, (508) 823-0430.
For directions or more details, download the flyer. Please RSVP by February 18, 2012 to: Marlo Schepper Grolnic at marloschepper@gmail.com or (978) 524-7819 or Khaled Barazi at khaledbarazi@yahoo.com or (617) 852-1422 and indicate the name(s) of the adults and the number of children in your party.
Wednesday, February 29, 2012. The Whitehead Institute located at Nine Cambridge Center, Cambridge, MA is hosting a special event from 7:30-9:30 p.m. in honor of Rare Disease Day. During the program, scientists and biologists will discuss their research on the fundamental biological processes underlying various rare disease, including tuberous sclerosis complex. Our own Khaled Barazi will be there to discuss the various challenges and opportunities that families face in advocacy and promotion of rare disease research. To learn more, please download the flyer or visit http://pulse.wi.mit.edu/2012/01/events/998 to register.
Saturday, March 31, 2012. Please join us from 10:00 am to 1:00 pm for an educational meeting regarding Transitioning from Pediatric to Adult Services. The meeting will be held at Shiners Children’s Hospital in Boston, MA. For parking information and complete address, please click here to download the flyer. Please RSVP by March 17 to Marlo Schepper Grolnic at marloschepper@gmail.com or 978-524-7819; or Khaled Barazi at khaledbarazi@yahoo.com or 617-852-1422.
On September 17, 2011 the TS Alliance of New England held the annual Step Forward to Cure TSC. It was great day with more than 200 people participating in the walk and raising over $55,000 for research programs. Thank you to all the volunteers who helped set up and run the walk and helped everything run smoothly. A special thank you to walk chair Stacie Verrill and the entire committee for their hard work, dedication and great success!
Click here to watch TV coverage of the event!
On May 21 the 1st Annual Rock for Riley event took place at The Grand Canal in Boston, MA. It was an evening of Fun, Food and Donations along with an amazing auction and a rocking band called Road Soda. The event was a success raising more than $10,000 in honor of Melanie and Kevin Vogel's daughter Riley. A very specail thank you to Melanie's sister Kristi Johnson for finding fantastic raffle prizes, Road Soda for rocking the crowd all night, Dave and the Grand Canal for venue and food, Kristin and Doug Eckelkamp for donating raffle prizes and volunteering, Kristin Taylor and Peg Graney for volunteering and Melanie and Kevin for making this event take place on behalf of the TS Alliance.