Sunday, November 4, 2012

MGFA Ohio Chapter Closes

It is with deep regret that I must announce the dissolution of the Ohio Chapter. The Ohio Chapter will cease operations as a non-profit organization serving Ohio members as a chapter of the national organization Myasthenia Gravis Foundation of America. Support groups throughout Ohio will continue to meet as scheduled through the local support group leaders. The MGFA will provide services to new patients and existing members through its telephone line, web page, newsletters, etc. Direct and personal patient services will not be provided in
Ohio apart from the support groups. Unfortunately, all sources of revenue for the chapter, both private and public, have diminished to such a small level that the daily operations of a chapter cannot be funded.

I wish to personally thank all the office personnel, support group leaders, board members, doctors, patients and members who have supported the chapter over the last 40 years. The chapter had its 40 year anniversary this year. Obviously, the Ohio Chapter has done great work for its membership over those years. At this time, it seems that the membership and its needs have changed so that an active state chapter is no longer demanded. Please continue to support your fellow patients and local support groups.

Below is a letter written by the original founder of the Ohio Chapter, Lois Siemer. She has some thoughts on the Chapter’s closing after 40 years.

Sandra L. Merrill
Ohio Chapter MGF

Today is a sad day!! I just received the news that the Ohio (MG) chapter is folding, not because a cause and cure have been found but because of the lack of funds and truthfully, lack of our faithful VOLUNTEERS. We have lost our “fire in the belly” because of the new rules and regulations issued by the National Foundation.

On March 7, 1972, forty years ago, a young lady founded the chapter because she wanted to help people, who like herself, had a little known illness called Myasthenia Gravis. As with the founding of any organization, it all started out with a DREAM. A dream of FAITH, HOPE AND CHARITY (LOVE). The FAITH that our good works would not be in vain. The HOPE that we could help find the cause and/or cure within our lifetime. The CHARITY for mankind that we would make a difference because of the LOVE of many people who kept the dream of this chapter ALIVE all these many years. However, sometimes that is not enough to keep a dream alive longer than the lifetime of the first VOLUNTEERS.

In this day and age, organizations that were once founded by VOLUNTEERS, are feeling the effects of National intervention/regulations which dictate the foundation’s mandates which are eventually passed down to the chapters. (It is happening with ALL charitable organizations…including the Girl Scouts.)

In the beginning, each local chapter used to raise its own funds, with local fund raisers, for local use. (The national office never gave FUNDS to the local chapters, nor did it assess any chapter for fundraising. The local chapters did VOLUNTEER to raise funds for RESEARCH.

As the needs of our patients became more demanding, and the local VOLUNTEERS aged and died off, the local chapters needed to hire office managers to meet the needs of the patients. It was difficult at first but it was doable when our membership responded to our requests of financial support. However, when the National Office was no longer staffed by volunteers, a national fundraiser organization was brought in and then funding really became an issue. When these organizations are brought into the picture at the national level, rules and regulations change. Now, it is required that each chapter gives a quarter of their revenue to the national office. With that big cut into the budget, the chapter has been struggling for the past few years. As you know within the past few years, the chapter has ended up as it started…in someone’s living room. So, as the final chapter comes to a close, I want to thank….

The original board of seven members were: Lois Siemer (Founder), Ken Adolph (Banker), Wes Mitchell (Insurance Agent), Alma Smith (RN), Ed Witmer (State Representative/Senator), Dave Reichard (Lawyer), And Mary Hodel (Community service). We met monthly in Lois’ mobile home where the sofa was always piled high with MG work. ONLY one of the board members was an MG patient, that one was me. We had three who had a family member with MG, and three who did not. It was a nice balance as each of us had our own strengths and interests. As time went on, when we lost some of our board members, MG patients were invited to serve. However, their energy levels were at risk and they often could not fulfill their full terms. When Lois moved to Illinois in 1976, she left the chapter in the capable hands of Dave Reichard, Wes Mitchell, Ed Witmer (deceased), Alice Richards (deceased), and Sally Mendell, an MG patient, who served faithfully for 12 years. Laurabelle Clemens,(deceased), who was a neighbor who came over each month to help with the newsletter mailings with handwritten labels.

In the meantime, over the years, as my role diminished, the following people kept my dream alive and well. My thanks to them, you were well served and I would like to recognize them with a “Well done good and faithful servants of the cause close to my heart.” Thank YOU…

• Sandra, the Co-chair, who has volunteered to keep the chapter alive.
• John Ness, Co-chair, who personally contacted patients and visited hospitals when needed.
• Lindie, the Office Manager, who has been working out of her home.
• Jacqueline Held, Executive Director for 35 years
• Emmalou Clark, newsletter editor for 35 plus years

We, all those listed above, want to thank our loyal support group leaders and the many, many volunteers who have supported the chapter for the past 40 years.
It still amazes me that the Ohio MG Chapter started with a newspaper article about my own journey with MG. When I was asked what I needed, I asked for stamps to be able to write letters and send out packets of information to new patients. It started out with 17 stamps. Within months of that article being printed in the Akron Beacon Journal, we found 67 patients throughout the state of Ohio. Within four years we had 62 patients. Old Stone Church donated the Olivet electric typewriter which was a great improvement over the old portable Royal typewriter. We now, in 2012 service almost a thousand patients and members. It saddens me…that those in Ohio, not yet diagnosed, will not have the benefits that this chapter has offered you and others like you over the years.

BE AWARE and ALERT to the symptoms of MG but also, be aware and alert to the fact that just because you have MG, you will not be immune from getting other diseases and illnesses. You have to be your own advocate and be ever vigilant in how MG affects you. As I see it, social networking can be a plus but mostly a minus because it lacks the personal involvement (the hands on experience) which keeps the local chapter alive but it is better that nothing. So, let us arrange to keep in touch because we have something in common…something more that Myasthenia Gravis…we are survivors!!

On a personal note, I was diagnosed with MG when I was 24 years of age (1965) even though I can trace some of my symptoms back to when I was ten years of age. Within a year and a half of my diagnosis, I married by beloved husband and two years later we had a beautiful daughter. When Margaret was a year old, I became bedridden for a year and a half. It was during that time, I was determined that if I survived, I would create a local chapter to help other people deal with myasthenia gravis. That dream became a reality on the 7th of March, 1972. In 1979, when we moved to Illinois I concentrated on being a wife and Mother until my health improved. I restarted my career as a special education teacher and became a “professional” volunteer with/for the Girl Scouts. After being diagnosed with breast cancer in 1995, I asked myself “Who Am I?” Well, I was my Father’s daughter, my husband’s wife, my daughter’s mother, a teacher, a Sunday school teacher, and a Girl Scout leader, but then I realized, “that was who I was to other people!” When I took stock of my interests and talents I began a new career. I always loved to travel and I loved the theater. I developed a one woman show, “Juliette on Tour” portraying the Founder of the Girl Scouts. I have had over 500 programs as I traveled 90,000 miles through 48 states and having programs in all but one state.

So, dare to dream. Dream big. Reach for the moon and enjoy the ride through the stars.

Yesterday is but a Memory.
Today is the Gift. So enjoy Today.
And make beautiful Memories.
Thanks for the Memories
To one and all

Lois M. Siemer
Founder, Ohio Chapter MGF

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