Wednesday, May 7, 2014

We parked the car in Harvard yard…literally!

I went to Harvard yesterday! And our biggest challenge was finding the parking garage. While that was, in fact, the most difficult part of our day, it wasn’t the most gratifying. I didn’t really know what to expect at a scientific symposium filled with students whose SAT scores were higher than I can count up to, but it was by far a memorable experience. 

We were there for the Genetic Disorder Symposium. My fear was that talking with young, student scientists would be way too scientific (not my forte) and not “human” enough. Our panel was made up of a scientist and CFO of an emerging pharmaceutical company, a parent, myself and Latham’s President and CEO, an adult consumer living in a Latham residence and his staff. All of us faced a lecture hall filled with students studying genetics and in particular, Prader-Willi Syndrome. Everyone there came to the discussion with a different focus and perspective on PWS. In total, the students heard about the challenges and joys of parenting a child with PWS, the emerging treatment and drug trials under way, the history of Latham’s PWS journey and a peek at the daily routine in our adult program.  We finished on a hopeful note of a more promising future for those diagnosed with the syndrome.

What was a pleasant and comforting surprise was the content of the Q & A portion of the presentation. I feared the majority of the questions would be pure science based--questions I felt least confident answering. It was therefore reassuring to see that the individual perspective we shared was driving the questions into areas that all of us could contribute to. Our staff person and individual described our nutrition program. Our CEO explained how our asinotherapy contributed to the quality of life of people with PWS. I spoke of pre and post GH treatment outcomes and promising environmental developments; the pharmaceutical members of the panel explained the drug trial process and where research currently is in this field. I believe the most questions were directed to the parent on the panel. Her thoughtful responses to the students’ questions gave them much to think about and ponder as they continue their studies in this field.

I hope several of the students I spoke with take me up on the offer to visit Latham. It was great to see their place; now I’d like the chance to show off mine!


Chris Gallant

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