Board Member Barb Corner

We are very sorry to share the news that one of the original members of the mgMN Support Group and original Board Member Barb Corner has passed away.

Barb was a staunch advocate for people with Myasthenia Gravis and worked for years to help people get the information she needed. She lived in the Brainerd Lakes area and ran a local support group there until Covid, but never stopped supporting her local friends.

As an mgMN Board Member she provided valuable information and was willing to help out with anything that was needed. She will be greatly missed.

This was her writeup on the Board Member page:

Barb was diagnosed with MG more than 50 years ago. "I told my parents I would not let this rare disease stop me, and it hasn't," she says. Barb went on to obtain her bachelor's and master's degrees and had a 33-year career as a teacher. She and her husband have three grown children, seven grandchildren and one great grandchild. Barb began attending annual meetings of the state's MGFA chapter in 1990. A couple years later, she started (and still leads) the Mid-Minnesota support group. Barb started a lending library for people with MG in 1995, and chaired the MGFA state chapter for more than a decade. 

Here is a link to her obituary for more information.

Barbara Corner Obituary May 11, 2026 - Brenny Family Funeral Chapel and Cremation Services

New MG Drug Available

During the January, 2025 Zoom Support Meeting, the group saw a presentation about Zilucoplan, a drug that was approved by the FDA in October 2023. It is manufactured by UCB Pharmaceutical

Zilucoplan is for adults with gMG who are anti-acetylcholine receptor (ACjR) antibody positive. It can be self=administered via once-daily subcutaneous injection.

If you would like more information, please contact your health professional.

Importance of Sunscreen for Those Who Are Immune Suppressed

Dr. Giuliani spoke to our support group on May 18 2024, and wrote up some information for us.


Sunscreen is particularly important when using immunosuppressants like azathioprine and CellCept (mycophenolate mofetil) because these medications increase the risk of skin cancer.

 Immune System Suppression: These drugs suppress the immune system to prevent organ rejection in transplant patients or to control autoimmune diseases. A suppressed immune system is less capable of repairing DNA damage caused by ultraviolet (UV) radiation from the sun, increasing the risk of skin cancer. 

 Photosensitivity: Azathioprine, in particular, can make the skin more sensitive to UV light, a condition known as photosensitivity. This heightened sensitivity means that the skin is more prone to damage from sun exposure, which can lead to an increased risk of skin cancers such as squamous cell carcinoma, basal cell carcinoma, and melanoma.

Increased UV-Induced Mutations: Immunosuppressive drugs can contribute to increased mutations in the DNA of skin cells when exposed to UV radiation, promoting the development of skin cancer. 

 Given these risks, it's crucial for patients on these medications to protect their skin from sun exposure. This includes using sunscreen with a high SPF, wearing protective clothing, and avoiding excessive sun exposure, especially during peak UV hours. 

 Azathioprine: Patients on azathioprine have an increased risk of non-melanoma skin cancers, especially squamous cell carcinoma. The relative risk can be up to 65 times higher than in the general population on transplantation rejection doses, with an unclear amount of risk increase with doses for neuromuscular disease. 

CellCept (Mycophenolate Mofetil): Similar to azathioprine, this drug increases the risk of skin cancers, although the risk is lower compared to azathioprine. 

Tacrolimus: This drug also increases the risk of skin cancers, particularly when used topically, though systemic use in transplant patients is associated with an elevated risk.  There is no risk known associated with using at neuromuscular disease doses. 

 - Methotrexate: This drug is associated with a modest increase in the risk of skin cancer, particularly non-melanoma skin cancers. 

 Relationship of Vitamin D Disorders and Autoimmune Conditions 

However, Vitamin D plays a role in the regulation of the immune system, and deficiencies in vitamin D have been associated with an increased risk of developing autoimmune conditions, including myasthenia gravis. Vitamin D modulates the immune response, and insufficient levels may lead to an increased autoimmune activity.  

It is important to keep a balance of Vitamin D generation which occurs with exposure to sunlight, and skin protection from sunlight.

Vitamin D Deficiency and Autoimmunity: Low levels of vitamin D are common in individuals with autoimmune diseases. This deficiency may exacerbate the disease's activity and symptoms.  *Myasthenia Gravis: Some studies suggest that vitamin D deficiency might be linked to both the onset and severity of myasthenia gravis, though more research is needed.  

Using Sunscreen and Maintaining Vitamin D Levels Balancing sun protection and vitamin D synthesis involves:  

 Sensible Sun Exposure: Short, regular intervals of sun exposure can help maintain vitamin D levels without significantly increasing skin cancer risk. About 10-30 minutes of midday sun exposure several times a week may suffice, depending on skin type, location, and season. 

Dietary Sources and Supplements: Consuming foods rich in vitamin D (such as fatty fish, fortified dairy products, and egg yolks) and taking vitamin D supplements can help maintain adequate levels without relying on sun exposure. 

Timing and Sunscreen Application: Applying sunscreen after a brief period of sun exposure (ie 5-10 minutes) allows for some vitamin D synthesis while still providing protection. 

It's important to discuss with your doctor to tailor these recommendations based on individual health needs and risks.


Brain and Life Articles Provide Interesting Information

There are two articles from recent issues of Brain and Life (brainandlife.org) that may be of interest to the group.  The links to the articles are:

 Chris Hemsworth pushes boundaries

https://www.brainandlife.org/articles/chris-hemsworth-pushes-limits-learn-how-brain-body-age

Ultra-processed foods and Dementia

https://www.brainandlife.org/articles/eating-ultra-processed-foods-may-increase-risk-of-dementia

Eight Benefits of Belonging to a Support Group

This was from a local paper in The Villages, Florida

Eight Benefits of belonging to a support group.

  1. Reducing distress, depression, anxiety or fatigue

  2. Improving skills to cope with challenges

  3. Gaining a sense of empowerment, content or hope

  4. Getting practical feedback about treatment options

  5. Feeling less lonely, isolated or judged

  6. Talking openly and honestly

  7. Staying motivated to manage chronic conditions or stick to treatments

  8. Improving understanding of a disease and your own experience with it

These reasons are why you should join our support group meetings. Check the Local Groups section for details.

2021 Annual Meeting FollowUp Information and Links

Dear MG Minnesota Conference Attendees,

Thank you for attending the fifth annual conference this past Sunday.  It was wonderful to see your faces and listen to your questions.


At the bottom of this post are the documents that David Hughes, the physical therapist mentioned. 


Here are the links to David’s and Josh’s presentations.  Please feel free to share the link with people you think would be interested in these videos.  They are NOT on YouTube.  Please do not make them available for the entire world to view.  If you would like to re-listen to Dr. Guliani’s quick presentation, please send me a note and I will send you the link, when I receive permission from him.


David Hughes, physical therapist 

 https://us02web.zoom.us/rec/share/i-LTgtUc0z9G6p5An_1GrbRsw7rxfBK_2S4D3_qzOVpqnTG7u_mVG5iRALE5mybN.xndAbYHfcSGF5YqZ?startTime=1629156770000

 

Josh Frederickson, “Living Better with MG” https://us02web.zoom.us/rec/share/3fJhvYWW2NQ5wirS_sghAO8gmI2FggwcLd04igLE40sOjUuG_4VpdSjPMet9aGPq.WbjO6xhCwVGyvLIt?startTime=1632668222000

 

Again, thank you for attending the conference.  We hope to see you in 2022.

 

 

Big Stone Exercise Therapies, Inc Documents

Lianne Anderson, mgMN Board Member, passed away

We are sad to report the passing of Lianne Anderson

She had MG since 1975. She began serving on the MGFA Minnesota Chapter Board of Directors in the late 1970’s and chaired the Twin Cities Support Group since its inception. She also served as Chair of Fundraising with efforts to bring in a sustainable amount for the chapter and for the newly formed mgMN organization. Lianne and her mother Millie established The Anderson Fund in honor of her late father Irv. The Anderson Fund is an active account within mgMN and is used to support the mission of Myasthenia Gravis Minnesota.

Her obituary is linked below and asks for donations to the mgMN Anderson Fund. If you wish to honor Lianne with a donation to our organization, please send a check made out to Myasthenia Gravis Minnesota and put Anderson Fund in the comments. Send a check to:

Monica St. Gernain (mgMN Treasurer)
16511 Lake Ridge Drive
Maple Grove, MN 55311

Link to Lianne’s obituary