Welcome to the ARDS Support Center, Inc.

The ARDS Support Center is a volunteer Public Benefit Corporation established under the State of California. The corporate address is 7172 Regional Street, #278, Dublin, CA 94568.

The primary purpose of the ARDS Support Center is to provide information, education, care and support for patients, survivors, family members and loved ones who have been confronted with the many problems resulting from the onset, treatment and consequences of the devastating condition known as Acute Respiratory Distress Syndrome. The ARDS Support Center will sponsor and participate in activities aimed at funding ARDS research, the furtherance of the primary goal of the ARDS Support Center and creating a broad public awareness of this deadly syndrome.

 

Board of Directors


Ken Jonah
Open
Open

President Open
Chief Financial Officer Wendy Jonah
Secretary Open
 

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.