idiopathic anaphylaxis information center

a resource for people with ia and other mast cell disorders

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My relevant experience

My experience as a professional writer and editor spans three decades. I've worked as a journalist, managing editor, course developer, developmental writer, feature writer, technical editor and senior technical writer. I have also published one novel.

My resume includes work in the fields of information technology and web development, and I have been moderating online groups devoted to various subjects since 1994.

I began moderating online support groups for people with chronic health conditions in 2003. In December of that year I began IA Support, a Yahoo! group for people who have idiopathic anaphylaxis.

In spring 2004, I began doing volunteer work for the Mastocytosis Society (TMS) by developing an online medical glossary for the TMS Web site.

Logo of Mastokids.Org

In July 2004 I was approached by the Board of Directors of Mastokids.Org and asked to help them deal with the problem of having their Web site repeatedly hacked. I took over management and development of their Web at that time. Within a week, I closed up the site's security issues, and I ran the site until November of 2006.

Logo of the Mastocytosis Society

In September 2006 I accepted an appointment to Chair a new TMS committee, the Research Advisory Committee, to assist and advise the TMS Board of Directors (BOD) in matters related to research and to help explain research and medical concepts in language that could be readily understood by TMS members who were not medical professionals. To this end I did the following:

  • Collected and organized literature for the TMS Annual Conference CD-ROMs, and wrote both HTML for navigation and introductory material
  • Assisted the BOD in defining research- and education-related goals for the organization
  • Assisted in preparation for TMS participation in medical meetings
  • Acted as liaison to the Mast Cell Disorders Task Force at the 2007 meeting of the American Academy of Allergy, Asthma and Immunology (AAAAI)
  • Researched and wrote articles for the quarterly newsletter and the TMS Web site
  • Encouraged BOD to send representatives to the 2007 conference of the American College of Allergy, Asthma & Immunology (ACAAI) in Dallas, TX
  • Edited transcripts of Medical Advisory Board (MAB) Q-and-A sessions at TMS annual conferences
  • Revised material for the special Health Care Professionals edition of the Chronicles
  • Assisted in development of a successful AAAAI Lay Organization grant proposal and the development of an implementation plan for the video project funded by the grant
  • Developed and maintained relevant bibliographic database in EndNote (citation software)
  • Responded individually to hundreds of questions and inquiries from individuals via e-mail, online support groups and telephone
  • Reviewed the request for proposal (RFP) for the most recent grant cycle and then reviewed all grant proposals received
  • Developed an introductory presentation on mast cells for the 2007 TMS annual conference in Houston, TX
  • Took over administration and management of the TMS online support group and instituted spam-blocking measures
  • Revised, updated and added material to the TMS Web site
  • Organized, with Kolleen Barlow, a Pediatric Planning Committee to help develop a focus and vision for TMS's work related to children with mast cell disorders.

At the beginning of August of 2008, I resigned from doing volunteer work for the Mastocytosis Society, but I have continued to work with people who have mast cell-related diseases.

Much of my experience in doing peer support and education has been working with the members of IA Support for over seven years. I should note that the people who are most likely to seek out help from an online group are not a random sample of people with IA. People whose IA is mild or very transient are less motivated to seek out a support group. IA Support’s membership is more strongly representative of those people who have more severe IA, IA that has lasted for a longer period of time, and/or IA that is more resistant to the available treatments. The group is far more representative of female patients (as are most online support groups), and the age range of the members is biased toward adults — teenage through middle-age. We do have some parents of children with IA, but obviously, we do not have many children as members. Also, the group’s composition is probably biased toward those who must deal with both anaphylaxis and daily symptoms of mast cell activation. I note these things here because they influence my outlook and the kinds of generalizations I am likely make based on my experience in moderating the group.

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Page last updated: January 17, 2012

 
All information contained in this site is one layperson's interpretation of medical journal articles, textbooks, seminars, presentations, and other materials. Nothing that is stated here should carry more weight than the informed and considered opinions of your own highly trained and qualified medical caregivers. The author of this site is not a doctor and has absolutely no authority to prescribe or diagnose.

The idiopathic anaphylaxis information center: A resource for people with IA and other mast cell disorders
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