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David and Terry assume leadership roles...
Wednesday, January 12, 2011

  

   Saturday, May 22, 2010   I would like to thank my friend, Cliff Heagney for heading the RI Hospital support group for the past year as he departs for greener pastures in Arizona. I will be running the group starting in June – my first event will be a dinner seminar, planned for August, held at the Johnson and Wales Inn in Seekonk, MA.  

   Today is Saturday, November 13, 2010…  Terry and I conducted our first PHA support group meeting with guest speaker, Jeanne Houtchens… and it was a record crowd! We had eighteen patients and care givers.

   Jeanne presented a slide show as part of our series on emergencies and emergency preparedness. I am thinking of turning this topic into a seminar series to be presented to the various groups across the country.

   Meeting emergency materials and luncheon sponsored by Mr. Kevin DeLisle of Gilead Sciences, Inc.  - Thank you for making this meeting a special one!

   Monday, December 20, 2010   It has been a challenging year for me - going from employment to disability, then taking the reins of the RI support group. I am very grateful to the staff of professionals at RI Hospital for making my disease easier to live with. I would also like to thank my co-pilot, Terry, for sharing her ideas with me and the support group, to make it the success that it is today!

   Wednesday, January 12, 2011   I thought for sure that the January meeting was going to be a disaster. The Saturday meeting was held between two snow storms - one on Friday and another on Sunday. We still managed to have 17 in attendance. Many thanks to Dean Donaghue of United Therapeutics for sponsoring lunch and Leigh Colbert of Actelion for flying in from DC to see our program. Of course, Liz Mahoney of Accredo was there to keep me honest.

   Clinical nurse, Barbara Smithson, came with a new PHer - it was a pleasure to see both of them!

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.