Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Living with LOTS

Though the number of families coping with Late Onset Tay-Sachs (LOTS) at the Annual Family Conference was few in numbers their spirit and courage is beyond measure.  Cary Berman, Eric Pastor and his dad Mark attended the conference for the first time! And we welcomed back Eric Koval’s mom Ruth Ann, Julie Stein and Don Greenblatt’s beloved friend and partner Sherri Moyer. Our small but mighty group attended the general sessions with all attendees as well as sessions specific to their unique needs and challenges that included Q & A with clinical expert Dr. Susan Perlman, Coping with Isolation and Finding Support, How Current Research Relates to LOTS and Promote Independence through Exercise. After two days filled with informative and empowering sessions, families coping with all forms of the disease, speakers, volunteers and Board Members joined the LOTS families to light a candle; raise a glass of Bailey’s and share stories and memories of friends lost to LOTS.

Cary BermanMy name is Cary Berman and I have Late Onset Tay-Sachs or (LOTS). When diagnosed by accident with LOTS  I was 1 of 250 in the world.

Recently, I attended my first NTSAD conference in San Diego! It was exciting to make friends with others who have an interest in this devastating disease. I have found that LOTS can be very isolating, and it was great to be among such caring, friendly individuals. It was also very refreshing for me to learn from experts more information about this medical challenge that, unfortunately, many doctors do not know.

Wishing all my new friends only the best, and looking forward to seeing you in Atlanta!