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ARDS
Support Center
Activity and Developments
November 27, 2001
This
is a summary of activity, developments and changes that have taken
place in the period from late in 1998 until the present day and also
will present some ideas of what seems to be in the future for the ARDS
Support Center.
In
1998, Sue Peterson, in an effort to help her brother John, an ARDS
survivor, went to the Internet and in reviewing some pulmonary forums
was able to find others who had survived ARDS, including some who had
post-ARDS problems similar to what John was experiencing.
Sue began to prepare a newsletter that was sent to those that
she had been able to locate. John and Mike Paul, another ARDS survivor, joined Sue's
efforts and with the help of others were able to get the ASC website
established late in 1998 with the idea of using the Internet as a
means of communicating with others who had been confronted with ARDS.
Growth
was rapid and in the next year others joined in the work of the ARDS
Support Center. Through their efforts a Support Staff was established,
the newsletter was continued using e-mail and Internet facilities, the
organization was incorporated in the State of Massachusetts and the
Medical Advisory Board gained the support of many esteemed physicians
and others involved in the research and treatment of ARDS.
In
October of 1999 there had been about 19,000 hits on the ASC website.
A year later the number of hits had increased to approximately
70,000.
At this writing the website hit count is nearly 145,000. The
monthly volume since October of 1999 has increased to nearly 4,000,
almost triple the monthly volume that took place during the first year
on the Internet.
That rate of growth has been supported by many changes that
have taken place, improvements that have been made and increased
support from the medical community.
Following are some of the highlights of that growth.
The
ARDS Support Center was first incorporated under the laws of the state
of Massachusetts.
Early this year the Board of Directors made the decision that
the statutes of the State of California were more amenable to
organizations such as the ARDS Support Center.
Accordingly an application to be incorporated under the statues
of the State of California was filed and approved.
The Articles of Incorporation provide the framework and support
needed to enable the ARDS Support Center to function effectively as an
organization.
Subsequent to the establishment of the ASC as a California
corporation, filings were made with the IRS to obtain legal approval
to become registered as a non-profit charitable organization.
When approved the ARDS Support Center will be in a position to
actively seek funding for ARDS research needs and for the ongoing
operations of the ASC.
The latter is important as it is recognized that the time might
come when the ARDS Support Center will find it necessary to seek and
pay for professional assistance in furthering the work of the
organization.
The
ASC brochure, "Understanding ARDS", was published in the
latter part of 2000.
Several doctors among the Medical Advisors Board of the Support
Center assisted and authenticated the content.
During the past 15 months nearly 10,000 copies have been
distributed to those responsible for Intensive Care Units in hospitals
throughout the country and also to those in charge of related
facilities such as rehabilitation centers.
A copy of the brochure was also included in the ASC website.
The brochure has been particularly helpful in providing
information which families and loved ones of those in ARDS crisis
could use in discussing the many ramifications of ARDS with the
attending physicians.
Just recently Dr. Hansen-Flaschen of the Hospital of the
University of Pennsylvania provided additional and revised information
for the brochure.
That update takes into consideration the latest in ARDS
research and also broadens the scope of the information presented.
An interesting sidelight is that this update was prompted by
the tragic events of Sept. 11 of this year.
It was one of the doctors' responses to those events.
The revised brochure was quickly installed on the website.
The printed version of the updated brochure is now available
for distribution.
The
ARDS Support Center website has undergone an extensive revision during
the past year.
The structure was completely revised and distracting elements
were eliminated.
Content was carefully reviewed and revised to assure that it
would be most readable and meaningful to those seeking information
about ARDS.
The content was reorganized to fit into three main categories,
ARDS Information, Communications and ARDS Support Center Information.
There is a constant effort to refine and add to the content of the
website.
In September of this year the conversion to the Orion23 hosting
service was completed.
This was done in a flawless manner and in such a way that there
was no interruption in the availability of the ASC website on the
Internet.
Significant
changes were made in the personal support facilities offered by the
ARDS Support Center.
The website now contains short biographical sketches of the
members of the Support Staff.
This makes it possible for viewers to identify those in the
group who have had similar experiences in dealing with ARDS.
The Pen Pal Circle has been made more functional.
The operation of the Immediate Support facility has been
bolstered by the expansion in the number of staff people involved in
the actual operation and control of the facility.
Publication of the ASC Newsletter was interrupted because the
person who had edited and published the letter no longer had the time
and energy to continue because of the need to attend to personal
health problems in the family.
Publication has resumed and the format and content has been
expanded to include news of interest about the ASC and also news from
outside the organization.
The
ARDS Support Center was asked by research physicians at the Hospital
of the University of Pennsylvania to assist in securing volunteers for
interviews to be held with the objective of obtaining post-ARDS
information about cognitive, emotional and psychological problems
caused by ARDS.
The ARDS Support Center was successful in soliciting volunteers
and staff members of the University Hospital conducted telephone
interviews with them. Recently the ASC was informed that preliminary
results have been prepared and that the full results of the study will
be presented to the American Thoracic Society convention in May of
next year.
That convention is one of the largest gatherings of physicians,
scientists and specialists with attendance from countries throughout
the world.
This
year the ARDS Support Center and representatives of the LDS Hospital
completed plans for an ARDS Survivors Conference to be held on
September 14-15 at Salt Lake City.
Many ARDS survivors and members of their families had planned
to attend.
The attendance and participation of a number of the leading
physicians in the field of ARDS research and treatment was arranged
and sponsored by the ARDS Support Center.
Other members of the medical community also planned to attend.
Unfortunately, the terrorist attacks that took place on
September 11 forced a cancellation of that event. Currently, plans are
underway to reschedule the Survivors Conference for some time in
September of next year.
These
are important developments that have taken place in the work of the
ARDS Support Center.
Looking to the near future, preliminary work is underway in two
very important projects.
One of the goals of the ARDS Support Center is to encourage and
establish a broad awareness of ARDS among the general public and to
enhance awareness among the Medical Community.
A team of volunteers has been established to work under the
direction of one of the ASC Staff persons who has a wealth of
experience in that field.
This is a very major effort and it is hoped that the campaign
will be launched by mid-year of 2002.
Another project of much importance is the creation of an ARDS
database.
The information for the database is obtained from information
secured from those who have been impacted by ARDS and from other
sources of information.
Initial design work is being done by a recent addition to the
staff of the ASC who is a computer Systems Analyst in the Information
Technology field.
It is hoped that this information will serve as a resource
supporting efforts within the ASC as well as research efforts of the
medical community.
Looking
further into the future the ARDS Support Center plans to become more
involved in matters relating to the post-ARDS problems of survivors
and their families.
Until just recently the medical community typically would not
be involved with survivors after being discharged from the treatment
facility, whether a hospital or a rehabilitation center.
Almost from the inception the ARDS Support Center was well
aware of the problems and difficulties faced by survivors and their
families, problems that not only involved many health considerations
of the survivor but also the stress and impact of the changes that, of
necessity, occur in the lifestyle of the survivors, their families and
loved ones.
The medical community has also becoming increasingly aware that
treatment, in many cases, does not end at the point of discharge, but
is often necessary in the months and years after the struggle with
ARDS itself has ended.
Dr. William Shull and Dr. Rosette Plotkin of the Hospital of
the University of Pennsylvania have a page on the ASC website that
describes many of the post-ARDS conditions that may occur and, more
importantly, outlines various avenues of treatment that are available.
The intention of the ARDS Support center is to use that article and
the insights gained from the Survivors Conference as a foundation for
the expansion of the role of the organization in providing post-ARDS
information and support.
This
is a brief picture of the earlier days of the ASC, mention of some of
the changes that have been made in order to more effectively
accomplish the attainment of the goals and objectives of the
organization as well as a few words about near term and long-term
projects intended to further improve the effectiveness of the
organization.
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