Virtual Monthly Meet-Up | Rare Community Crisis Response Webinar with Give an Hour (MGFA)  - Monday, July 28, 4:30-5:30 pm (pacific) - Register - Give an Hour is a national non-profit organization dedicated to transforming the mental health experience through accessibility and understanding. Our mission is to develop resilient individuals and communities, and to grow our social impact through responsive, scalable, individualized mental health programs aimed at closing access and delivery gaps to mental health care. Everything we do is informed through the knowledge gained from lived experiences. Our approach is to listen, lean in, learn, and lead others.  MGA has partnered with Give an Hour to offer structured, evidence-informed training session. We will focus on how to manage conversations with your peers who may be in crisis. There will be opportunities for participants to ask questions and practice real-life application of the covered material. Everyone will also be provided with take-away best practices and an action plan for urgent scenarios.

🔥ADAPT NXT: Fixed Cycles or Every-Other-Week IV Efgartigimod in Generalized Myasthenia Gravis (Wiley) Two updated schedules for efgartigimod (Vyvgart) infusions prove better clinical outcomes for MG patients. (Sent in by SoCal MG Group member Frank Morrow.)

Antibodies and MG (Myasthenia Gravis Association)  Dr. Kaminski walked us through the different antibody types associated with myasthenia gravis and what they mean for diagnosis and treatment.

Were You Diagnosed With Seronegative MG diagnosis? Consider joining this group. (Myasthenia Gravis News)

🔥🔥 Hospital Emergency Advocacy & Treatment (HEAT) Kit - The Eosinophilic and Rare Disease Cooperative offers a helpful kit for Myasthenia Gravis patients. "Our HEAT Kit™ is offered free of charge for the diseases we serve. Prepared in advance, it will take away some of the anxiety and stress of those visits, enabling you to receive the care you need. Our goal is that it improves your quality of stay and may reduce the number of days spent searching for underlying issues that are not understood by the general ER physician or hospitalist. The kit will be helpful taken to any doctor visit! Try it out! This kit is designed to help not just the person with the disease but also loved ones and care partners. These events are stressful for the whole care system. Be sure to order and complete yours today!'

Myasthenia Gravis Holistic Society - A holistic approach to treating MG

Energy Conservation and Pacing for Success with MG (MGFA Wellness Series - YouTube) This is an excellent presentation by Elizabeth Plowman, PT. She gives tons of advice on how to reduce daily MG fatigue by conserving energy and pacing your activities. My favorite part is the cell phone battery analogy.    Mike Stabile

• "On August 17, dentist and MG patient Dr. Gene Cassagrande led an [MGFA] Wellness Webinar focused on having a successful dentist visit when you have myasthenia gravis."  Click the following link to read the highlights and watch the YouTube video of the seminar, which contains very important considerations for MGers when going to see a dentist or oral surgeon:  https://myasthenia.org/MG-Community/Blog/myasthenia-gravis-considerations-in-dentistry

Possible sex and racial disparities in myasthenia gravis care (NIH) We must stop this.

Earlier this year I mentioned a way to use Google Search to find new articles related to Myasthenia Gravis released in "the past 24 hours". There's another method to stay on top of many recently-released medical journal articles about MG using the search function at Cureus. I created THIS LINK for you that will list the articles on MG in reverse chronological order. Be sure that the "Date" triangle is pointing down. (Mike Stabile)

MyastheniaGravis News has released a series of new videos about MG which are a short viewing and include the transcripts.

  New Analysis Finds Millions of People on Statins May Not Need Them (Healthline) Do you take statins, for controlling cholesterol, as a preventative medicine? Also, millions of Americans (including many MGers) who don't, probably should be taking them. Either way,  you might want to read this. Finally, be aware that statins may (of course! 😡) be a risk for myasthenia gravis, but also you should probably still take them. As always, our snowflake condition always makes taking drugs so complicated, so always be learning everything that you can!

Recalls, Market Withdrawals, & Safety Alerts (FDA) Most people are aware, via news on TV, radio, newspapers and other news sources, about the occasional reports of government product recalls issued for popular items found to be dangerous. Examples include: food; children's toys, cribs,etc.; drugs; household items; automobiles; and so on. On this government website you will find all the recall reports issued by the FDA (US Food and Drug Administration) for most foods, drugs and related products.

MG patients with time-consuming self-care (and their caregivers) often have less time to read the news and are less likely to be aware of product recalls (we all eat, and so many of us also take lots of medications!) putting us at greater risk of harm. Also, you may see a recall for a product that you don't necessarily use, but know a friend or family member who does. Chances are good that they aren't aware and will surely appreciate your heads-up!

What I do, and suggest that you consider doing, is subscribe to the FDA's recall newsletters (look for "MedWatch Safety Alerts: FDA Safety Information", "FDA Consumer Updates", and "Recalls, Market Withdrawals and Safety Alerts" after entering your email) which are emailed to consumers on a regular basis, keeping you current on the latest recalls. Usually you can tell by the email title what the product is, saving you the time of reading the email itself if the product doesn't apply.

MIke Stabile

Mestinon shortage (Myasthenia Gravis News) There's increasing, anecdotal reporting of Mestinon 180 mg ER shortages (not the 60 mg version). Users might want to keep a close eye on their pharmacy's supply and be prepared to contact other area pharmacies if their primary site does report delays in filling Rxs. Also, it is very dangerous to take three 60 mg tabs at once as a replacement for the 180 mg. The 60 mg are NOT extended release (ER) and you could suffer a major reaction (cholinergic crisis) and end up hospitalized, if not worse (scroll down to "OVERDOSE" on this web page from Healthline). Definitely consider talking to your neurologist about how to best take replacement 60 mg tabs as you wait for the resupply of 180 mg.

• The Myasthenia Gravis Association gave a presentation by Ghazala Hayat, MD, St. Louis University, about the different antibody types of myasthenia gravis, presented via MGA Virtual Monthly Meeting for August, 2023. Here is the video recording of this interesting talk:  https://www.youtube.com/watch?v=QmPVt_SbdAU

WebMD has a blog devoted to MG. Articles written by a staff of contributors cover a wide range of subjects pertaining to living with MG.  Check it out.

 The role of complementary health approaches in managing pain  A downloadable PDF ebook that "provides an overview of complementary health approaches for pain, including acupuncture, massage therapy, meditation, spinal manipulation, yoga, and more. You’ll find summaries of what the science says about whether these approaches are useful and safe, as well as tips to help you be an informed consumer."  This information might be helpful for those of us, with MG and its associated pain, who are looking for relief.

Myasthenia Gravis: Creating a Plan for Your Treatment and Well-Being (WebMD) - This is a newly-released series of 4 instructional video lessons on MG. Learn more about Myasthenia Gravis (MG) and share with your friends and family.

The 4 subjects covered are:

• Developing Your Treatment Plan

• Surgery for MG

• Managing Your Energy Throughout the Day

• MG’s Emotional and Mental Impact

A good week for member submissions!  Here's another article, written by one of our group members, Richard Schmittdiel!!  Check out "My MG Story".

Wellness Series: Making The Most Of Your Doctor Appointments (click to view video) - This is a terrific, MGFA-sponsored presentation about how to get the most from, and prepare for, your next visit with your MG neurologist or other MD. Includes transcript.

If you're interested in Rystiggo, one of the latest FDA-approved drugs for MG, check out this excellent video presentation by Gil I. Wolfe, MD.

CDC advisory panel says people 65 and older should get a Covid spring booster shot  (Stat) - Important for us MGers on immunosuppressants.  Note that over 95% of people hospitalized for Covid this winter had not received the latest Covid booster.

Also:  CDC eases isolation guidance for Covid and other respiratory illnesses  (Stat)  Most of us MGers are immunocompromised, so this relaxation of Covid isolation guidelines might actually increase the risk of infection for us, so be careful out there!

WebMD recently released a suite of over 20 videos about myasthenia gravis.  The videos are short and professionally made, with lots of info for all of us.

🎉 🎊 🎈  OUR FIRST MEMBER-SUBMITTED ARTICLE! (click)

Science.org today (Dec. 7, 2023) had their sixth and final episode of the ADVOCACY IN RARE DISEASE webinar series.  If you have any interest in developments in the more global side of research, scientific application and marketing of drugs and other therapies for rare diseases (like myasthenia gravis) then I highly recommend this six-episode series of one-hour webinars.  You will need to register (no cost) with AAAS to watch these recordings.  I found today's (final) episode ("Driving Technology Advances") to be particularly informative with respect to the issues encountered in the consolidation of patient data across the rare diseases research development & application spectrum.  Everything discussed can be applied to myasthenia gravis.

• Neelam Goyal, MD is a renown Neuromuscular Neurologist at Stanford. Earlier this year she was interviewed on a Medscape podcast and answered questions about Pyridostigmine (AKA Mestinon).  It's a very good up-to-date summary regarding the use of this drug to improve MG symptoms. You can hear the podcast (and read the transcript) HERE.  This podcast is one of six in a series of interviews, by Medscape, of prominent doctors and researchers specializing in myasthenia gravis. 

Are you considering Yoga for helping you cope with MG?  "This 40-page eBook provides an overview of what the science says about yoga for health, including its use by children, older adults, pregnant women, and people with health conditions. You’ll also find information on how to practice yoga safely, as well as a summary of national survey findings about the use of yoga in the United States."  Get the FREE eBook (PDF) here: Yoga for Health (eBook)

MG FRIENDS PROGRAM

• Would you (or a loved one or friend) like to connect with a trained MG advocate so you can talk to them directly?   

How It Works  -  Here’s the link.  The MG Friends program connects people with myasthenia gravis and their caregivers to experienced, trained MG patients who can share common experiences and help you manage your MG.  MG Friends is here to support you! This FREE peer-to-peer phone support program helps ensure that you have the information you need to face this diagnosis and improve your quality of life. 

• From RARE DISEASES NETWORK: Watch this video Emerging Complement Inhibitors for Generalised Myasthenia Gravis Related but Different in which 2 top MG researchers (and a pharmaceutical consultant) discuss the latest MG drugs approved or still under investigation.  It's from May, 2023, but still very pertinent today.  Sent in by one of our group members.

• To learn more about the use of telehealth in MG, the Myasthenia Gravis Rare Disease Network (MGNet) is conducting a pilot study, “Adapting Disease Specific Outcome Measures Pilot Trial for Telehealth in Myasthenia Gravis (ADAPT-teleMG)” (clinicaltrials.gov ID NCT05917184). The team is evaluating telehealth visits and remote disease-specific assessments for patients with MG.

Long-Term Bone Density Changes and Fracture Risk in Myasthenia Gravis (MDPI) Study of MG patients on Prednisone. From abstract:"This study aimed to assess long-term changes in bone mineral density (BMD), evaluate osteoporotic fracture incidence, and examine the relationship between MG-specific factors and bone health outcomes over a 10-year period. This single-center, prospective cohort study included 28 MG patients."