New York Support Group Meeting, Spring 2005Since our inception in the spring of '03 with three members meeting at the Chat 'n' Chew in Union Square, the DebRA New York Support Group has grown to over 100 EB patients, friends and family.
The NY Support Group is committed to supporting EB adults, children, and caregivers in the New York Metropolitan Region, including the tri-state area of NY, NJ and CT. We meet approximately six times per year. While we try to rotate location, we most often meet at Queens College Fitzgerald Gymnasium.
Our next meeting will be TBD late January or early February.
Co-leader: Kathy Twible, rjt516@optonline.net
Co-leader: Michele Disco, ebnysg@yahoo.com
Treasurer: Jane Rode
Secretary: Theresa Purpura
Supplies Coordinator: Juliann Morabito, jules218@optonline.net
Queens College Fitzgerald Gymnasium
By Car: Exit the Long Island Expressway at Exit 23 Main St, and head south on Main. Take a left on Reeves Avenue. Take your first right into Queens College, which will be after passing the gym. There's a sign that says 153rd St, and you will go through a gate. Go up a small hill, and the building will be on your right. Turn into the first right to go past the front doors, take the first left, and you can enter the parking garage on the right to park. There will be signs to direct you to the room where the meeting will be, starting at the far right when you go in the front doors.
By Subway: Take the #7 Train or Long Island Railroad to Main St. Flushing. On Main St., take the Q25, Q25-34, Q34 or Q17 bus to the campus. You can see a campus map at www.qc.cuny.edu/Map/. Please note - the map on the website is not oriented north/south (turn map 90 degrees counter-clockwise.)
The NY Support Group has hosted lectures by Sharon A. Glick on Gene Therapy, Madeline Weiner on Oral Manifestations and Management, and Suzanne Cohen on the status of EB Research. Meetings have also included crayons for the kids, supply swaps and a moving talk by a 76 year-old with RDEB; and always, homemade sweets!
We are proud to have sponsored "Research Update 2004" hosted by Columbia University Dept. of Dermatology as well as an annual Holiday Party.
Through raffle sales, Yankee Candle sales, and donations the NY Support Group has raised the funds to donate $14,000 to research, supported an office assistant for Madeline Weiner (which DebRA has committed to continuing,) and sent EB-affected families to the Mats Wilander Celebrity Tennis and Golf Classic.
For an update on our activities, please see the following links to our meeting notes:
