In Memorium:


Paul Marks

Bill Powell

Nancy Majava

Ray Price

Steve Knight

Howard Ober

Terry Thompson

John Windhorst

Total History

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  COPD-Support History

Leadership Timeline:








Total History of COPD-Support

The list grew out of a desire for Alpha 1 folks to communicate using email and a few folks including Paul Marks started the ancestor of our programs in early 1997. At the time the program used limited the subscribers to 50.
A few months later it was decided to also have a chat list so that the main list could be strictly on topic so a COPD-CHAT list was established with a subscriber limit of 50. At the same time and because they were about to max out, they changed the vendor to LSOFT and kept the name COPD.

That continued until it became clear in early 98 that neither list was doing the job desired so the COPD-CHAT list was moved to LSOFT. That helped for a while but folks were still not using COPD-CHAT for their off topic stuff. The problem was not that management did not like off topic posts but that new members were leaving because the volume was outrageous for them. Around this time, Bill Powell and Elaine Rester became the managers of the Lists. So the List was changed to a COPD and COPD-MOD set of lists plus the chat room for the off-topic stuff. All messages went to COPD and only those that were on topic were forwarded to MOD. That worked but the problem was that in order for the program to work at that time, everyone had to a member of both COPD and MOD. That was fine until we neared the magic number of 1,000 subscribers. With over 1,000 subscribers LSOFT considers that a business account and the charge goes up dramatically - beyond what we can afford.

To compensate, we removed the combined subscribers and had those who wanted all the off-topic stuff subscribed to the COPD list and those who wanted just on-topic stuff were subscribed to the MOD list. In order to cross post the messages, the lists had to be configured to "Public posting" which meant anyone from anywhere could post to either list.
We didn't tell everyone that but that was how the lists were configured up till March 2002. New subscribers were added to the MOD list and as our number of new folks increased, the repetitive questions, concerns, answers and subjects became an annoyance to those old-timers on the MOD list. To alleviate that, in December 1999 the COPD-SUPPORT list was created.

The new folks were now subscribed to this list. A small handful of veteran COPD'rs volunteered to be Cadre folks who would monitor the COPD-SUPPORT (SUPT) mail and field any questions or concerns and welcomes as they saw fit. This has worked exceptionally well as the volume of mail is not that high and the repetitious stuff doesn't bother the veterans any more. To keep this list trimmed and efficient, it was decided that folks would only be allowed to stay on it for 60-90 days at which point they would have to switch to a veteran list (COPD or MOD) or they would be dropped. All three of these lists are cross-posted. There are editors (re-directors) monitoring each list and any good question, answer or comment concerning copd is sent to the other two lists. This cross posting is what required the lists to be "Public Posting". The editors re-direct the mail from their list to the other two lists. Re-directing allows the message to carry the original sender's name and address so any one replying will send their reply to the author and not the editor. Because the message bears the authors address it had to be allowed to post to the list. This condition allowed many SPAM messages to get through as well and we had a ton of filters in place in the configuration files to stop a good portion of it but not all of it.

There was a copd-caregiver's newsletter that was managed by Elaine Rester for awhile before it was transformed into a new list called COPD-CAREGIVERS in Feb 2000. Elaine Rester still oversees that list but the list management work is still done by us in administration.

In May 2000, Bill Powell and Nancy Majava created COPD-SUPPORT, INC, a non-profit organization. It is registered in the State of Florida and with the IRS. The domain "copd-support.com" is also registered so it will always be around. The incorporation transformed the Lists from a single person in charge to a Board of Directors who could handle things if one person came down with the miseries. Bill must have had an omen about this because we lost Bill around April 2001 due to a collapsed lung that never healed. The Secretary / Treasurer Nancy Majava took over as President.

The corporation allows for dues-paying members and is one of the primary sources of revenue to keep the Lists running. Originally there were less than 100 members but on January 1, 2001, the corporation membership was open to all the folks on the veteran lists. There is an annual member meeting usually in September where the members vote to add or re-elect Board of Directors. The Board of Directors hold meetings as needed and elect their officers at the first meeting after the annual member meeting.

We were losing about a third of our new subscribers because the volume of mail on the SUPT list was too much for them. Even the digest flavor made such a large email that folks wouldn't wade through it and just quit in frustration. To compensate, a new list, COPD-CONDENSED was created in early June 2001. This list was a condensed version of the SUPT list's digest with all the fluff and unnecessary stuff removed and put in a Q & A "just the facts, ma'am" type format. This greatly reduced the size of the SUPT digest and seems to be well liked by those folks using it. As of this writing, we limit subscription to that list to newcomers but they are allowed to stay on it permanently if they do not wish to switch to another veteran list after 60-90 days.

In late June 2001 President Nancy became very ill, was hospitalized and was still in ICU for well over a year till she passed on 23 Feb 03. Ray Price was elected President 25 October 2001 and served until June 2002 when he resigned because of what appeared as vicious in-fighting amongst the Board Members and Ray. As a Vice President Howard Ober carried on the duties of the President until the Board of Directors elected him as President at the October 2002 meeting. Carolyn started working with Diane Bell and Howard in the spring/summer of 2004. Last year Howard started talking about finding someone to take his place as President. He felt that he had put in enough years. Carolyn Krall offered to help him out and was elected President in December of 2009.

Carolyn resigned as President in June of 2011 due to health reasons. And Terry Thompson volunteered and was elected. Terry passed away on Jan 9 2013. Carolyn had taken Howards position as Secretary in Oct 2012 when he passed away, so could not step up.

During Ray's tenure we finally obtained enough volunteers to allow us to close and moderate the COPD and SUPT lists. This immediately stopped all spam from getting through (except for some mistakes by the moderators,). The MOD list was closed to subscribers only and with a moderator watching incoming traffic and an editor re-directing outgoing mail cross-list mail went on as usual.

The CARE, NEWS, COND and ADMIN lists are also closed to public posting. During Carolyn's tenure we consolidated all of the veteran lists to COPD due to finances and lack of volunteers. We still have the chat room where off topic is welcome and in 2006 Dave Mabo put a COPD-Support Forum up on his server for us. That brings us up to date on our History as of 2013.

Howard Ober, Terry Thompson and Carolyn Krall

___________________________________________________________

In 2017, the Caretakers list ceased operation due to inactivity.

Carolyn Krall, Elaine Rester and Jim Swedlow



Mr. Paul Marks
Founder of the COPD/E Online Support Mailing List


Is it possible that you recognize much of what you see on this web site? Does that phrase that you read sound familiar? Are the managers of this web site a group of individuals who plagiarize in order to develop a web site? Well, the answer to the last question is no. However, the answers to the first few questions is probably yes because much of what appears on this site was written by Paul Marks who was the owner and caretaker of the COPD family of mailing lists from inception in early 1997 until late 1999. During the time that he was the list caretaker, it grew from about 7 members to almost 1,000 (997 to be exact) in September 1999. Paul did not do this alone, he had many helping hands along the way including Claude Baril who provided the friendship, expertise and equipment to assist Paul in many aspects of the List including establishing a site for a special off-topic mailing list for our members and a dedicated chatroom for member get togethers. Claude passed away last year because of complications which developed after a lung transplant and will be missed by us all.

Paul cut the strings of management of these lists in 1999 because it just became too much for him to try to handle full time employment, administer the Alpha 1 family of online mailing lists, and this family of lists too. He did so with great reluctance but even as he cut the strings, he asked to be kept on the list of individuals authorized to administer the lists in the event there was some kind of emergency need.

Paul passed away today, February 2, 2000, not as a direct result of COPD, but because of heart failure. Our hearts and prayers go out to his family. We all owe Paul a debt of gratitude. For me, that probably means some extended years to my life. I am sure that others also owe this same debt which can never really be paid. I suppose there is a place where such caring and selflessness is rewarded.
Thank you Paul - you are a class act!

Bill Powell,
aka-Papapoo
February 2, 2000



When Paul decided to begin an email support group for anyone with COPD, little did he realize that he was opening the door to almost 1000 people. He wanted so much to give everyone a place to exchange experiences and make a friendship that would help them through the emotions both good and bad of having a disease. He remembered very much what it was like to be diagnosed with Alpha One and have no information and no one near that had the same disease. In his dream, he made so many friends that they can't be counted.

May Paul look down upon us with a smile as he realizes that his dream is alive in those 1000 people. They are committed to helping others as Paul has helped them.

Personally, I found a really good friend in Paul. We met on the Alpha List, as I was a caregiver for an Alpha and I was on the list to get more information. After a period of time, someone told me that I should see Paul's new list. So I joined the list and began helping people as much as I could with questions from a caregiver's point of view. I don't know why but Paul approached me to become more involved behind the scenes of the list. I said yes and he began training me right away. With so much contact through email, we became really good friends. He was very understanding of the stress and emotions of caregiving. He always realized when I was depressed with the emotions of caregiving and when I had a problem. Words just aren't adequate to express the friendships that are built through the Internet. It is as close as having a friend next door.

He was very proud of his family. That was one of the things in common that we talked about in our writing. His love of his family mirrored my love for my husband; so we had a good understanding of each other.

I know that he is not gone completely because he left all of us with memories of friendship, kindness, and consideration for others.

Elaine Rester
February 2000

William (Bill) H. Powell 4.14.1934 - 4.16.2001


When Bill Powell took over the COPD family of mailing Lists from Paul Marks he had the two things necessary for all great innovators. He had a dream and he had a plan.

His dream was to make information available to all who suffer from COPD. He wanted everyone educated about their disease, the treatments available, the availability of such treatments, the medications prescribed. He wanted everyone to be informed so they could advocate for themselves.

The second part of his dream was to provide support. He recalled the frightening experience of having your life changed in an instant: to be dependant upon medications and supplemental oxygen and last, but far from least for a self sufficient person, to be dependent on the kindness and support of others. He realized that the only people who could understand the despair that the initial diagnosis could generate were those who had gone through it and come out the other side determined to make viable life changes.

He searched, persuaded, cajoled, bullied and charmed others into working with him to establish the Programs you now see. They all started in the brain and the heart of this man. Lastly, realizing that we are all finite beings, he incorporated the Copd-Support family of Programs, designed our Logo, selected the first Board, wrote the ByLaws and assured the continuity of the Programs.

Bill, you are truly a hard act to follow, but we are keeping your dream alive and well.. Because you taught us by your example that we are not our disease, but are capable of achieving some measure of greatness, we will follow your vision and work at the task you have left us. May you breathe easy and continue to watch over us.

Nancy Majava
April 2001


Nancy Majava


After Bill Powell died, Nancy Majava stepped in and carried on the leadership of COPD-Support, Inc. Her story is best told by excerpts from various messages posted after her death.


...The best direct tribute anyone of us can offer for Nancy is: DO YOUR EXERCISES! It's what kept her alive for many years, and then alert for those 20 hospitalized months.  JohnW Minneapolis

...Over the years, Nancy worked tirelessly beside Bill Powell and earned the deepest respect of many of us oldtimers when she undertook the difficult task of stepping into Bill Powell's shoes as President of the Support website, where she did a fantastic job till she herself took sick. Chip Gatchell

...I spent last night wondering how to put in words what I am about to say. This is mostly for the newcomers to know as I know that all of you that have been here for a while know how blessed we were to have a friend like Nancy. She was always a really good sounding board for me when I had problems and she always could make me laugh. We actually would not have this Family of List programs without the valuable help of Nancy. When Bill Powell, decided the best thing to do to preserve the list in case of medical problems, he chose to Incorporate (and also to give all donations the tax free status) I was in a position as caregiver that I could not help much. Nancy stepped up and stood beside Bill and helped him set it all up. She became Secretary/Treasurer which was a very demanding position and she did a wonderful job of it.  Elaine Rester

...On a personal note, Nancy, thank you for starting me as a chat host so long ago - many in The COPD world have picked up the dedication that people like you and Bill exemplified.  Chip

...I doubt Nancy had an enemy in the world, she was always so positive, not to mention the endless hours of work she did to keep this operation going. She is also the one who volunteered hours to put together our COPD cookbook, set up chat schedules, and who knows how many other projects before replacing Bill. We have been missing her and will continue to do so.  Shirley in SC



Ray Price - 10.20.1933 - 3.17.2008


As COPDers, we have been blessed by having help, support and guidance from some very remarkable people. Many of these have left a lasting impression through their dedication to the COPD Community.

Ray Price exemplified this in his active years. Beginning with his membership in COPD-Support.com in the late 1990's, he educated himself on COPD, then stepped forward to help others. There at COPD-Support.com he worked tirelessly for the COPD patient and family. Starting with email list moderation, Ray served in many capacities, including Presidency of COPD Support.

In 2002, believing there was an opportunity to provide even greater support, Ray, along with 6 other active COPD Patients, founded COPD-International. There he helped form many of the early programs and policies that are still in effect today and served in many capacities including Chairman of the Association.

In spite of more than 50 years of smoking which robbed him of his lung capacity and eventually of much of his mobility, Ray continued to educate people on not smoking and on COPD. After a major bout with pneumonia in late 2004, he was only able to walk a few feet at a time.

Even then, when his health allowed, Ray used to use the visual impact of his personal story and decline to educate young people on the risks of smoking. In an interview with Candace Chase of the Daily Inter Lake paper, he described his visits to his local Junior high school as follows:

    "I pull into the parking lot and the principal comes out with a wheelchair and
    wheels me into the classroom - my oxygen tank is with me so they see it all."

     Once in the classroom, he told the students about the impact smoking has had
    on his life. "I tell them if your parents smoke, they're dumping that smoke down
    your lungs so you best get on their back to quit smoking," Price said.

Ray spent a lot of time studying the latest research on tobacco including the impact of secondhand smoke. A member of Tobacco Free Flathead, he used his citizen power to lobby for tobacco control measures before the legislature.

Those of us who knew Ray can verify - He never pulled any punches.

Even after COPD had taken it toll on Ray, preventing him for such pleasures as golf, fishing and even walking any distance, Ray's drive to help others continued. In addition to his work with COPD patients, on the first and third Tuesdays of each month, he and his wife Helen could be found managing the Martin City food bank.

During his last few years, Ray became increasingly active with his local All Saints Episcopal Church, as a communicant, Eucharistic Visitor, a member of the Altar Guild, and a member of the Vestry. One of his joys was to participate in the church retreats at St. John's Abbey in Minnesota. As an Eucharistic Minister, Ray would take Holy Communion to shut-ins in the Whitefish area. As Father Bradley of the All Saint's Episcopal Church said, "often in bad weather, the only person on the road would be Ray", on his mission to reach those who could not get to church. All this in spite of his own difficulty caused by his COPD. He went on to describe Ray as a most kind, gentle, well read and articulate man who quietly kept everyone on the straight and narrow on issues pertaining to the handicapped and disabled.

Ray passed away of natural causes on March 17, 2008, at North Valley Hospital in Whitefish, Montana.

Ray's philosophy was that we have so much to be thankful for, in spite of our illness. He certainly left a lasting impact on all our lives, through all that he left behind. Even greater though, is the impact he left far beyond our COPD Community.

His work will live on in so many different ways - carried on by others who have been touched by this remarkable man's determination to prevent COPD from dominating him and by his kindness, cheer, dedication and enthusiasm.

Chip Gatchell


Steve Knight


Steve Knight (Steveo) was a guiding force in all areas of the COPD-Support group. His research, analysis, knowledge and willingness to help will be sorely missed by everyone.

He was one of the charter members of Let's Get Fit and deeply involved. His influence will outlast the annals of this support group in every area. He was "one in a million" and will be truly missed by every member because he touched the heart and soul of everyone of us in some way.

Cecil Montgomery


Howard P. Ober Jr. - 7.2.1946 - 10.22.2012


Howard joined COPD-Support shortly before me and we discovered each other as two computer types. After the loss of Bill & Nancy and then when Ray Price left us, I encouraged Howard to assume the role of President - and he was an excellent one. Howard was one of those very effective people who quietly keeps the organization peaceful while enabling very healthful growth. Howard and I talked frequently about a variety of things such as; computers, his time in the Air Force in Australia, his neck radiation, and some COPD Support things, but nothing that suggested his people skills. I was surprised to find the technically proficient Howard so interested in the TLC world but I now understand. Howard's willingness to empathize with people about their problems and situations earns him my highest tribute.

John Windhorst


Howard was a guiding light to all of us here and I am so very glad that you, his family shared him with us for 13 years. He has helped many of us steer our way through the mine fields of COPD and brought more than a few of us into the world of computers and how to work with spreadsheets.

He worked tirelessly to maintain the group and help those who needed help. My husband and I had the privilege of spending an afternoon with Howard a few years back and it was an afternoon to remember.

Carolyn Krall


I did not have the privilege of knowing Howard for as long as some of you had. But in the few years I had the privilege of working with him I saw nothing but good qualities in him. He was always willing to help whenever I had a problem with the computer or a program I was trying to use and had all the patience in the world! He was a kind person, very diplomatic and had a great sense of humor! I loved to catch a mistake if he made one! That was not very often. He has made his mark on this organization and it is one that will last for a very long time.

Terry Thompson


It's so hard to say goodbye to such a wonderful friend. Since 1999, Howard was the one who made me feel welcome, the one I went to when I needed people advice. Or sometimes just an encouraging word or a good chuckle! Because that was what Howard was all about helping people and making them feel good. He was a great leader, spending endless hours for the sake of our group, and he had that special knack for running things smoothly with his easy style. I will miss him dearly.

Mary Paul


The loss of a good man is always hard and the loss of a good leader is even harder, but the loss of a good friend can leave you feeling empty. Howard was all of these to everyone on this list. Over the years Howard has influenced many of us and helped so many learn to adapt to this illness. He will be gravely missed.

Bob Moran


It is with heavy heart that I learn of the passing of a dear friend. Howard and I have been on the list together since day one. He has helped me on many occasions...but I will always remember the days after Hurricane Katrina. I was here alone beginning my clean up and without power for 21 days. Every single evening Howard would call me to chat. I looked forward to that so much. He helped me get through a very hard time....

Elaine Rester


Howard is one of the many people that I never met in person but he was always there with an answer to any question I might have. It was like a security blanket just knowing he was there and now that blanket is gone.

Dick in Missouri


Terry Thompson - died 01.26.2013


Terry Thompson joined us on Aug 3 2009. Terry then joined Smoke No More on Aug 4, 2009 and quit smoking on Aug 11. She eventually went on to be one of the Administrators for the SNM Group.

Somewhere around Oct 6 2009, Terry saw the request for Volunteers on our Forum and sent a note to me stating she couldn't access the survey, for good reason it wasn't up at the moment. She answered a few questions and she became a new Management Trainee to work with Howard Ober, who was President at the time and me. Terry worked hard for the group in the background, learning new things and we got to the point that Terry, Howard and myself worked as one as far as management duties was concerned.

Terry was nominated and voted onto the Board of Directors in 2010 in recognition of all the work that she did for us. In 2012 she ran for President when my health was interfering with my duties. She was voted in unanimously. Terry called herself my *evil twin* we talked every day via aim, generally more than once a day. Sometimes it was for Management business, but most often it was just to talk, like good friends do. If we missed a day, it seemed like something was wrong. Even when I was on vacation we talked at least every other day. Knowing Terry was on the other end of my computer was one of the bright spots of my day. My morning coffee was not complete without hearing from her. I am going to miss her so very much, but I need to let her go because she is so much better off. She is no longer in pain, she can breathe easier now and she is another Angel to watch over us.

We have so many Angels now, and it is so hard to see us get another one, but we always carry on and help the next person to come along who is scared and unsure about COPD. We have all the Angels sitting up there saying "Yup I remember what I told you when you first started - now pass it on." Terry also belonged to LGF and was quick to post to the list when she had an answer or something new for folks to see or use.

Carolyn Krall


John Windhorst - died 02.13.2014


I would like to tell you a little bit about John. Especially for those of you who did not know him. John has been around since the beginning of COPD Support.

In the time that I knew him, he was not very active on the list itself, but he was Vice-President of our Board, and our Web Master. He was the one who dealt with the company that "Hosts" our Web Site.

He was ready and willing to step up to do whatever needed to be done, even when his health wasn't the best. He was always there to lend an ear or even to bend an ear about what is needed to keep things running smoothly.

He was one of the back bones of our group. An unsung hero whose name most of you never heard before today. But without John and others who worked with him getting us up and running, we wouldn't be here. And for me personally that would have been a disaster. I got my first common sense take on COPD and learning to live despite it right here. And to honor John and all the rest who have gone on, I am trying to pay it forward. Without them, I might not have made it this far. John will be missed by so many of us, but he is breathing easy now.

Carolyn Krall