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An Inspirational Myasthenia Hero for So Many in the MG Community

An Inspirational Myasthenia Hero for So Many in the MG Community

By Michelle Baumgartner

Lenora “Lynn” Waltz was an amazing advocate for the myasthenia community, and she touched so many people during her years of committed and unrelenting volunteer work. Her story is truly inspiring, and she serves as a model for anyone considering becoming a volunteer and advocate for those living with MG.

 

Lynn passed away in early January 2021. She was instrumental in starting a local Myasthenia Gravis (MG) support group near Pasadena, Maryland, which ultimately became part of the Myasthenia Gravis Foundation of America (MGFA). She was a passionate, fearless, and tremendous advocate who was a source of strength for many newly diagnosed MG patients.

 

Lynn served as Secretary of an MG Chapter for years and took on many leadership roles to help patients. She had the foresight to create a much-needed, dedicated telephone line and post office box, mailed out informational MG packages, and organized monthly MG support group meetings. She also helped organize educational sessions led by physicians, nurses, and other healthcare practitioners to discuss and educate patients on emerging new MG treatments.

 

Her dedication helped create an environment where patients could discuss the highs and lows of living with this chronic condition. Lynn was adamant about utilizing a portion of annual funds to directly help patients alleviate their high medical expenses.

 

Lynn was known to obtain necessary medical equipment and even drove patients to healthcare appointments, that would have otherwise been missed. She truly saw each MG patient as an individual (like a snowflake), living a solo experience but part of a collective group and community. With the help of her daughter, Stephanie, Lynn designed decorative magnets to symbolize the uniqueness of MG patients, and many proudly displayed them on cars in the area to honor the community.

 

Jo Monka, an InfuCare Rx home infusion nurse, shared a very deep friendship and loving connection with Lynn. Jo treated Lynn with intravenous immunoglobulin (IVIG) faithfully every three weeks for many years. When asking Jo what Lynn meant to her she said, “Lynn taught me everything I know about MG from a patient’s perspective. She put a face to MG. Her kindness, compassion, her fierce spirit made me not only a better nurse, but a better person. You can meet hundreds of people who don’t connect with you, and then you meet that one special person who changes your life forever. Lynn was that person.”

 

The following note was written by Michelle Baumgartner, and Lynn’s daughter Stephanie, read it to Lynn just prior to her death. It is a heartfelt, inspirational tribute to Lynn.

 

Dear Lynn,

 

I wanted to express what an honor it has been to not only know you as a patient, but as a person and a friend for the past fifteen years. You have been a North Star to me and my entire team. You are a person that means what they say and says what they mean. You are not to be taken lightly, you are not to be dismissed, and you are as tough as they come.

 

As one really gets to know you, they realize that you are all good and love on the inside, like a Cadbury egg on Easter.  If you were lucky enough to be one of your people, you were as loyal as they come. Your love for family and friends was unending. You did the right thing, even when it was difficult, because the right thing and the hardest thing are sometimes the same exact thing.

 

Lynn, you are a ray of sunshine, a true North Star, the type of person that keeps everyone going when you just do not want to go anymore. I remember you calling me directly during a very difficult time in my life. You told me you knew who I was and that I would get through this. You shared that you had been through something very similar during your career, and you knew exactly how I was feeling. It was like God sent you directly to me that day to get me through this challenging time.

 

You have always championed me, and you, Jo, Diane, Chris, and Myra were willing to follow me to my new position, when truthfully, I was uncertain. You are absolutely one of the reasons I was brave enough to start over. I still cannot believe I am this lucky.

 

I will never forget our conversations and secrets around the View Table.  It has been my absolute and deepest honor to know you and to be a small part of your care over the last fifteen years. I am a better person for knowing you, and I hope to emulate you until my last breath. I will forever love you and all you have done for the MG community.

 

In both life and in deathyou were fierce!

 

Your loving friend,
Michelle Baumgartner

 

For those who knew Lynn, her selflessness, devotion, sense of humor, and her direct nature will never be forgotten. Her passing is a huge loss, but we are better people for knowing her and having her brighten our lives.

 

(InfuCare RX made a significant donation to the Myasthenia Gravis Foundation of America (MGFA) in Lynn’s honor)

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