Crisis Line Report 2004
(928) 279-0833
Manager: Tammie Ferris, licensed counselor and HS sufferer
Engendered: December, 2003
Purpose: To provide information about HS to inquiring callers, some of whom are HS sufferers and some who
are members of the medical profession, including doctors and to counsel those suffering from HS who are having
difficulty coping and, in the worst cases, are possibly considering suicide.
Operations: Most calls are responded to immediately, whereas others may require a call back, depending on
my activities and locations at the time the call comes in. December through August, plus part of September,
this was a toll free line, but became increasingly expensive for HS-USA. In mid-September we switched to a cell
phone (actually two cell phones were part of the package) system with Cellular One; due to our nonprofit status,
this company charged us no start-up fees and the charges per month have been reduced significantly to an average
of $102.50 (as opposed to the previous average of $250 up, with the highest charge of $ 454!). A person calling is
instructed to leave a brief message and phone number and I usually called back immediately; however, there are
times when it is impossible for me to call back right away, such as being in a ‘dead zone’ or while undergoing
medical treatment.
2004 Activity: There were a total of 915 calls made for a cost to HS-USA of $2,728.47, $2,130.89 of which
was billed by the toll free service company. I have estimated that 60% of the calls were information requests
and 40% were crisis calls. Of the informational calls, some were from doctors.
Plans for 2005: I will keep a log of exactly which calls are informational and which are crisis; of the informational
calls I will keep records of how many are doctors and other medical professionals and maintain names and other
pertinent information if provided. The name of this service will be changed to ‘Help Line.’
2004 Grants Committee Report
This committee was commissioned by the HS-USA Board of Trustees at its annual meeting in
Nashville, Tennessee on June 8, 2004. The committee was to have been selecting members by
mid-August, 2004. Originally, sixteen people volunteered and expertise ranged from experienced
in grant writing through somewhat experienced to no experience, but interested in helping.
It was decided that two types of grants should be pursued: those of $5,000 to $25,000, or so, to help fund
our educational efforts, such as the printing of brochures and other materials and supporting our
annual conferences. A second type of grant would be for medical research ($300,000 up) and would
first require the formation of a medical advisory panel (MAP) that would oversee the awarding of
the grant and the peer review follow up. A MAP is currently being solicited.
Because grantor institutions and philanthropic foundations give preference to those potential
recipients who have demonstrated the ability to independently fund their operational expenses for
two to three years, it was decided to rely on donations within the HS community, fund-raising drives
among individuals and businesses and miscellaneous funding from entities such as Cafepress,
eScrip, InkBank, Food Lion, MyCause.com, etc. to provide financial support for operations on
a continuing basis and after three years actively pursue major grants.
Volunteers will be divided into several teams and will allow people with varying experience to
participate. Teams will include 1) searching for available small grants and requesting applications;
2) searching for the sources of major grants and requesting appropriate applications; 3) grant-writing
for smaller grants; 4) grant-writing for major grants and 5) evaluation of outcomes of awarded grants
(a requirement of all grants, before final payments are made). Grant-writing teams should be restricted
to two or three people who live in close enough proximity to allow frequent meetings.
This was all that was accomplished in 2004. In 2005, those who have volunteered to help will be
contacted and teams will be setup. Also, due to work-related severe stress causing frequent severe
flares of HS, I must resign as Chair of this committee. ~~~David Edwards