Twenty Years and still going......

[Carolyn, Director]

History of
Northcoast Lupus and Fibromyalgia Support Group


Back in 1988, Janet Thomas of Seaside, Oregon met with a group of ladies and one gentleman to share what they knew about their chronic illness, Systemic Lupus Erythematosus. Some were newly diagnosed and others had been living with the illness for some time, all with varying medical problems. Meeting regularly to share their knowledge and information on their illness, they often would only have 5 or 6 people due to extreme nature of lupus….flares could be from moderate to extremely severe, often life threatening. This information is what I remember from what was told to me when Jerry & I joined the group in 1990.

In 1990 there were maybe 20 members on the list but no more than 7 or so were able to attend, and often there would only be 3 of us with lupus, with maybe 2 spouses also in attendance. Janet’s lupus was active and she was trying to hold down a part time permanent job so she could maintain her medical insurance, besides her living expenses. She was ready to close down the group. Carolyn Glein was newly diagnosed and literally hungry for information on what to expect from lupus in the future. She immediately volunteered her and her husband, Jerry’s services, ending up in charge of the Lupus Support Group. At that time the group met in the conference room of the Seaside Library. The meeting continued monthly at 2:30 in the afternoon – Janet got off work at 2:00PM and that gave her time to attend. The meetings remain at 2:30PM in the afternoon today.

Carolyn became a lifetime member of The Lupus Foundation of America and often shared articles from their publications which would spark discussion for the meetings along with what the attendees had to share and question. Since it was a small group she would send out a meeting reminder to everyone along with a copy of an article she had found in some medical publication, she & Jerry subscribed to many University Medical newsletters, along with purchasing books on lupus. With encouragement from the local rheumatologist, Dr. Tom Valentine and word of mouth, the group started growing and so did the monthly reminder. After weighing the pages we found out you could send 10-12 pages at the same rate as 2 pages…so why not make it a real newsletter, printed on the Glein copier. The group was notified by the library that they had gone over the fire code for the number of people that could meet there.

Somewhere around 1992 we had a full newsletter going out, and moved the meetings to the Education Center in the Providence Seaside Hospital. That has turned out to be great for us and we thank them very much for their great hospitality over the years. At that point in time we started inviting medically related speakers to the meetings, that along with notices in the newspapers we continued holding our attendance around 20 each month, not meeting in July and August, as very few would attend during those two months. Jerry would always fill in for Carolyn when she was ordered to remain in bed due to lupus, so there was always someone there to carry through.
Carolyn who already had many side illnesses that came along with her lupus was also diagnosed with fibromyalgia syndrome. At that point she asked Dr. Valentine to come to a meeting and speak on Fibromyalgia. On September 1992 he came with his slides, and announced he would stay as long as possible after the meeting to answer questions. That meeting was the highest in attendance we have ever had at a regular monthly meeting – 54.

It was probably at that meeting we realized the need for a support group, not only for lupus but also for fibromyalgia. Many of our lupus members were coping with fibromyalgia, but many others without lupus were also suffering with it. Those with fibromyalgia continued attending the next few meetings and our monthly newsletter mailing list started growing. At the end of 1992 we officially welcomed those with fibro and named the group, The Northcoast Lupus & Fibromyalgia Support Group. The spelling of Northcoast the way it is today was not a mistake but done intentionally to set it apart from any other entity that also had north and coast in the name. We are a definite group dealing with the chronic illness of lupus and fibro and all the additional problems that go along with them. Sometime in the 1990’s Janet Thomas retired and left our area, but she remains on the newsletter list today. The group believed that “quality” of life, even with an illness was the important thing to strive for, thru education, information and a positive outlook.

Strictly by word of mouth the group grew adding people from various states other than Oregon and Washington. The expenses of the newsletter also grew and we could no long do it out of the Glein’s checkbook and the donations from members. We didn’t want to set a subscription cost for the newsletter, donations were all we ever expected or wanted. The Oregon Arthritis Foundation was located in Portland and had invited Jerry and Carolyn to attend their 7 day Lupus workshop, and after meeting them and learning more about the group, they offered to do our printing and often our mailing. It came at a very good time for us as soon after that we grew to a mailing list of 500, including most states and 4 countries. When the Arthritis Foundation changed managers they wanted us to go to a smaller newsletter with fewer mailings, and they wanted to editorial rights. We thanked them but said we would rather remain independent then to give up our rights. It was a good move as the Oregon Arthritis Foundation no longer exists, the nearest one is in Washington state. The Lupus Foundation of America often invited us to come under their authority, but when we learned of their expectations which would often be more than the members health and abilities would withstand, we thanked them, but turned down their offer. The group as a whole was not able to handle golf tournaments, dances, many mile walks, etc. – when the meetings only average 20 partially well members with maybe only one or two able to volunteer their help, how could they possibly handle such affairs. With the larger number of newsletters we had to have them commercially printed. For many years the print shop at the school district gave us a reasonable price to do the printing, now we are connected with FedEx Kinko’s who not only recognize our non-profit status but give us a very nice discount. Jerry still does all the folding and labeling of the newsletter by hand.

In the 90’s we also started making use of the computer and the advantage that being online could help the group. We started out as a Yahoo Group who shared messages dealing with both lupus and fibromyalgia, and were fortunate to have one of our members who was an RN become our “Resident Nurse” to help answer questions and give advise. It is amazing how many are unable to attend meetings or even have a support group in their area. Patrick McNeese, son of Jerry and Carolyn, living in Tennessee offered to start a website for the group. It was simple in the beginning with copies of articles from the newsletter, a special article or two each month, along with links to other safe medical information sites, here too the main moderator was Julia Kegg, our Resident Nurse. We soon picked up our first member from Australia, who asked to use our lupus information in a support group they were just starting….could they be our “sister group”. We now have members in Australia, New Zealand, South Africa, Canada, United Kingdom and of course through out the United States. In the 90’s we also became a non-profit organization. We have had literally thousands of people come and go in the Northcoast Lupus and Fibromyalgia Support Group…all have touched our lives.

Carolyn had some especially tough times in the 1990’s due to lupus, making several trips to hospitals both locally and in Portland. Jerry usually stepped in to be the main facilitator for her, but occasionally they would have to call on a member to help out, Sue Vernon and Carol Wamsher both sat in the facilitator chair once or twice with Carol taking over the handling of the library. In the new millennium Carolyn’s lupus started getting milder and she & Jerry wanted to take some longer trips, so Carol Wamsher volunteered to co-facilitate the meetings and also to act as a Program Chairman. Jerry and Carolyn needed a break from the meetings and after announcing such, several volunteered to serve on a board for the group. Jeanne Nordmark and Judy Jeffries started going early to set up the meetings along with Carol which made everything so much easier.

Around 2005 (remember I also often suffer from memory lapses, especially the dates) Jeanne Nordmark and Carol Wamsher volunteered to be the meeting co-facilitators, along with Pam Fields who became the board’s secretary. Jerry and Carolyn remained as publisher and editor of the newsletter, along with being co-Directors of the Northcoast SLE & FMS Support Group. There are three parts to this group...the meetings started it all, the newsletter built it up, and the website took it global. The three parts keep it strong, hold it together....the newsletter announces the meetings, encourages the website. The meetings have their own personal entity as they are limited to who is able to be there - both by proximity to where they are held, and to those healthy enough to attend. The newsletter was started to help those who weren't able to attend, so they would still feel they had something to hold onto to help them cope. And the website was started to enable us to be closer in touch with those same people, and to those who had no support groups in their area...which now includes 6 countries.

Jerry & Carolyn sold their home in Warrenton, Oregon in May of 2006 and were able to fulfill a lifetime dream of traveling and living in their motorhome. At the same time, Patrick McNeese, webmaster turned the website into a forum that is filled with information and education dealing with lupus in all it’s many forms along with fibromyalgia that is no longer considered a syndrome, but a true illness in it’s own right. Julia Kegg, RN is still the main Moderator encouraging others and answering questions in the name of The Northcoast Lupus and Fibromyalgia Support Group. The group’s webmaster, moderator, and facilitators serve on the Supervisory Board with the publisher and editor who are also the co-directors (which is how it is stated in the Articles of Association). The facilitators will over-see the monthly support group meetings and if they so choose with a volunteer advisory board of no more than 5 members. This support group has always run smoothly with volunteers understanding that the purpose is, and always has been to support each other with education and information. It is not always an easy task due to our chronic illnesses, but it is always a task of love.

Not many independent medical support groups have ever made it to their 20th anniversary. Not only is there no longer an Arthritis Foundation in Oregon, there is no longer a lupus support group in Portland, and very few lupus or fibromyalgia groups in the state, none with the history of The Northcoast Lupus & Fibromyalgia Support Group that began 20 years ago here in Seaside, Oregon. Many thanks go to Sheila Sanderson, her committee, and Carol Wamsher & Jeanne Nordmark for this celebration.


This is pretty much how we remember the past 18 years of the 20 years we have served you all. Jerry & Carolyn Glein, Directors March 2008

[Carolyn, Director]

Any history needs to be updated from time to time don't you think? This update is on the Northcoast Lupus and Fibromyalgia Support Group which has entered it's 21st year. The big change that has happened to the group is that it is no longer a 3 point support group as of February 2009 but strictly a group that meets in Seaside, Oregon at the Providence Hospital on the 3rd Monday of each month.

Jerry & Carolyn Glein who have been directors of the group since March of 1990 will no longer be part of it...their resignations are effective as of Feb. 2009. Also Patrick McNeese and Julia Kegg will no longer be on the board of the Northcoast Lupus and Fibromyalgia Support group.

The new directors, board members, and facilitators are now: Carol Wamsher, Jeanne Nordmark, Rob and Sheila Sanderson. And we hope that they are able to continue on many years running the Northcoast SLE & FM Support Group.

This forum and website will now be known as MY Lupus/Fibro Support Group. And it will continue on, as it has done in the past, along with the quarterly newsletter making it's own history. Keep in touch with us as Jerry & Carolyn (directors), Pat (webmaster), and JuliaRN (resident nurse) continue informing and educating everyone that happens upon this website from coast to coast of the U.S.A. and on and around the rest of world. You are all welcomed here. There is still a Quarterly Newsletter by postal mail that is available. .