Narcolepsy Network mourns the passing of Sharon Smith
It is with great sadness that we share with you the news that Sharon Smith, past president of Narcolepsy Network (NN), has passed away. She leaves behind her loving family, including her beloved husband and sons.
Sharon was an exceptionally passionate and committed advocate for and friend of people with narcolepsy. An NN member who worked closely with her over the years said “Sharon was the heart and driving force of the Network, wearing countless hats serving in whatever position was necessary at the time with exceptional knowledge and unlimited skill.” She not only worked tirelessly as a leader of NN to promote the organization and its mission, she also reached out on an individual basis to people with the condition and their family members. She spent countless hours every day answering phone calls and e-mails and leading online chats as well as in person support groups to help as many people as she could.
Sharon devoted her entire being to helping people with narcolepsy, often putting in 60 to 90 hour weeks on a volunteer basis and despite having narcolepsy/cataplexy. She wrote and revised many informative pamphlets, maintained relationships with doctors and researchers in sleep medicine, raised money for research and NN and communicated with drug companies and government agencies. She was instrumental in updating and improving NN’s website, revising NN’s newsletter, The Network, to fill it with current research updates accessible to the lay person and other cutting-edge articles, and she encouraged large scale advocacy. An active member of NN for 25 years, Sharon spent over six years as NN’s President with almost seven years on the Board and she participated on every committee. Even while battling a terminal illness, Sharon selflessly served as the chair of NN’s 2012 conference committee, organizing an outstanding conference of top researchers, medical and support professionals and other speakers that attracted a record breaking number of attendees. Her dedication and contribution to NN has been profound.
In making her final arrangements, Sharon had a request. She and her family have asked that, in lieu of flowers and as her final gift to help individuals with narcolepsy find the encouragement, guidance, services and support they need, contributions in her memory be made to Narcolepsy Network, 129 Waterwheel Lane, North Kingstown, RI 02852. If you wish to make a contribution by check, please indicate that you are doing so in memory of Sharon. If you wish to use NN’s website narcolepsynetwork.org to make a donation, please click on the Donate Now button in the upper right corner of the home page and be sure to indicate in the comments section that your donation is “in memory of Sharon Smith” to assure that it is properly credited to her legacy.
We will miss Sharon greatly,
Eveline Honig, MD
Executive Director, Narcolepsy Network
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Date Created: June 29th, 2013
Last Updated: July 1st, 2013