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Free to Be

Imperfect

A beloved doctor’s patients convince him to move to UConn Health — where he plans to cure a rare liver disease
By Julie (Stagis) Bartucca ’10 (BUS, CLAS)
Photos by Peter Morenus

Alyssa Temkin, age 11, pauses in the middle of a school basketball game to test her blood sugar.

A beloved doctor’s patients convince him to move to UConn Health — where he plans to cure a rare liver disease
By Julie (Stagis) Bartucca ’10 (BUS, CLAS)
Photos by Peter Morenus

For Alyssa and mom Gayle, a typical day of trying to be as normal as possible involves Gayle at school in a room near the office, staying in touch with her daughter by walkie-talkie. Alyssa tests and doses herself in class, gym, and while playing on the school’s athletic teams. But GSD patients don’t feel the effects of low blood sugar until they are moments from a seizure, so Gayle stays close around the clock. Lily, 9, likes to tag along to appointments with Weinstein. “He’s her hero — he saved her sister,” says Gayle.

Discuss

  1. Tara says:

    Thank you for this article and Gayle if you read this thank you for persevering and getting Dr. Weinstein to CT. My son is 6 and has 1a and this gives me so much hope that there will be a cure by the time he is a teenager.

  2. John says:

    Dr. Weinstein, your are an awesome person! I salute you! Thank you for all you do!
    Zacharys’ Popi John

  3. Ellen Adler says:

    Hi, I am the mother of a soon to be 42 year old AGSD Type 1A patient. His glucose is fairly stable on 6 doses of 10 TBsp of cornstarch 4x day.

  4. Alberto says:

    My complete admiration for the Weinstein family, Gayle and Allisa., Thank you for working for everyone’s dream GSD

  5. Robert Ford says:

    Thank you for this great article. We have a grandson who is 1 year old and has GSD 1a. We would love to see him get in to see Dr Weinstein at uconn, he is on a waiting list now. What can we do on the West Coast to help with the cause?

    • UConn Magazine says:

      Hi Robert,

      Thank you for writing and wanting to help. Here are the contacts you asked for:

      Our website for donations is 
      http://www.GlobalCenterForGSD.com
      http://www.AlyssasAngelFund.org
       
      Donations can be sent to:
      Global Center for GSD
      333 Bloomfield Avenue Suite D
      West Hartford CT 06117
       
      To inquire about getting to see Dr. Weinstein please call his program coordinator: Traci Resler at 860-837-7800.

      Best of luck to you and your family,

      Lisa

  6. Alan Weinstein says:

    David – Mom and I are so proud of you and all that you do to make the world a better place. The hope to have provided to your patients for an ultimate cure and a normal life is a wonderful gift to them. I am certain that one day in the near future we will all be celebrating your success in curing this terrible disease. Love, Dad

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