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Type 1 Diabetes - TrialNet e-news - Spring 2013

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LIFT study offers long-term follow-up

Nine-year-old Sean Lally and fourteen-year-old Raquel Flaksman were already both veterans of TrialNet research studies when they joined the LIFT (Long-Term Investigative Follow-Up in TrialNet) Study. As LIFT Study participants, TrialNet is monitoring their progress, including such factors as disease status, general health, insulin requirements, and long term effects of experimental treatments.

LIFT studies are available nationwide for:

    1. Participants who developed diabetes while participating in either
      the Pathway to Prevention Study or a prevention study,

      OR

    2. Participants from new onset studies that have ended.

According to Jennifer Marks, M.D., Lead Investigator for the LIFT Study, and Professor of Medicine at the University of Miami Miller School of Medicine, "In addition to providing long-term follow-up for individuals who take part in TrialNet new onset studies, the LIFT Study gives us a unique opportunity to study the development of type 1 diabetes in its earliest stages."

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LIFT study participant Sean Lally and his Diabetic Alert Dog, Fielder.

Sean Lally of Kalamazoo, MI, is taking part in the LIFT Study following his participation in the GAD in New Onset Diabetes Study at Indiana University. As a LIFT Study participant, Sean and his family receive important test results and information about his health.

"We go back every January for testing," explains Mom Lisa. "Sean doesn't like being in hospitals, but he loves Indianapolis, so it's a great trade off."

While they are there, seven-year-old sister Samie is screened as a participant in the Pathway to Prevention Study.

"We knew we wanted to get involved in research, to not only to help our son, but to help other children," says Lisa. "We feel like we are making a difference."

Finding new ways to deal with type 1 diabetes is a family affair for the Lallys. When Dad Pat, who also has type 1 diabetes, had seizures this summer, the family adopted a Diabetic Alert Dog to help monitor Pat and Sean's blood sugar levels.

Sean wrote and illustrated a book "Fielder the Super Dog" about their dog, a British black lab they named Fielder. In September, Lisa, Sean, and Fielder appeared on the popular TV show The Doctors to share their experience.

Raquel Flaksman of Deerfield, IL, had also completed the GAD study when she signed on for the LIFT study.

Raquel's mother, Lidiya, a researcher herself, reports, "Raquel is still producing insulin after four years, which is pretty good. We wanted her to continue to be monitored, and we wanted to help further the research."

"Every six months we go to Indiana University for a study visit. It has been a wonderful experience, and Raquel loves going there," says Lidiya. "They have a very committed staff that is always willing to answer our questions and talk to Raquel on her level."

Raquel explains, "I was excited to be part of the long term study. It gave me hope. If my involvement can provide information to help anyone, I've already made a difference. And, honestly, I think that's the most constructive way to turn something negative, like having diabetes, into something positive".

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LIFT study participant Raquel Flaksman with a sign that says why she participates in research. Raquel was one of many study participants who took part in a project by Indiana University summer intern Rachel Holbreich, about why young people participate in research. In short, Raquel says, "I am excited to be part of the long-term study. It gives me hope."

 

For more information about the LIFT study, ask your study coordinator or visit d-tn.org/LIFT/