Myasthenia Gravis

Support Group

of Southern California

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Message from our Group Leader

Hello, and welcome to our website created in 2023 by the Myasthenia Gravis Support Group of Southern California. We provide you with information and resources to help you learn about your MG and make successful decisions regarding its management. Caregivers will hopefully also find useful information here. 


It's primarily designed to provide valid and reliable web links to quality MG content available on the internet. We also provide information about many upcoming virtual meetings of other MG support groups that encourage the participation of any myasthenia gravis patients living anywhere. 


This support group started in 2019 and has grown to over 100 members throughout California. We work with other MG support group leaders, patients, caretakers and medical professionals to foster relationships and collaborate with them to improve our connections. 


Please feel free to email us with your questions and comments, and suggestions regarding this site (including any pertinent web links), at mgsocalgroup@gmail.com.

Connie DiPasqua

Support Group Leader

 contact: mgsocalgroup@gmail.com

Webmaster: Mike Stabile

contact: mgsocalgroup@gmail.com

* Upcoming MG SoCal Group Virtual Meeting *


September Support Group Meeting - Saturday 12/14/2024  9a-11a PST  Zoom: TBD  

Request copy of meeting notice: mgsocalgroup@gmail.com

(Note: MGSoCalGroup members automatically receive these notices in advance from mgsocalgroup@gmail.com.)

Other Upcoming Virtual Meetings of Interest 

(Most meetings are virtual via Zoom; anyone may join and all are free.)

Why should you join a Myasthenia Gravis support group? (video) 


Phoenix MGFA Monthly Support Group - Tuesday, July 30, 5 PM Arizona (5 PM PST) - Zoom - TBD

Future meetings in 2024:  Every month on the Last Tues (except Dec.): Jul 30,  Aug 27, Sep 24, Oct 29, Nov 26, Dec 17.


Conquer MG - Anywhere MG Virtual Groups - Tuesday, August 13,  Noon-1:30 pm (Pacific) - REGISTER

We now have two virtual Anywhere Support Group meetings each month. These meetings are open to all MG patients and caregivers, wherever they live, held monthly on the 2nd Tuesday and 3rd Thursday, all Noon-1:30 pm, Pacific. Upcoming meetings:

2024 Dates: Sep. 10, Oct., Nov. 12, Dec. 10

2024 Dates: Aug. 15, Sept. 19, Oct. 17, Nov. 21, Dec. 1


Or Email info@myastheniagravis.org to let us know which meeting you want to attend; we will send the Zoom link.

Sign up to receive email notices of virtual meetings and other Conquer MG news.  Here is their List of Support Groups.

(YouTube recordings of previous Conquer MG meetings are available HERE.)


Stanford Support Group Meeting - Tuesday, Aug. 13, 5:30 (Pacific) - REGISTER

Topic: MG Antibodies & What They Mean to You  - Presented by Srikanth Muppidi, MD

Meets the 2nd Tuesday of every Feb., May, Aug. and Nov.

Future meeting dates: @ 5:30 p.m. PST: 11/12/24.

**Note: Slide decks of previous meetings can be downloaded HERE.


MGFA Wellness Webinar Series: - Thurs. August 15, 11 a.m. (Pacific) - REGISTER

Topic: Spend Your Spoons Wisely – Energy Conservation And Pacing For Success With Myasthenia Gravis

Recordings of previous MFGA Wellness Webinar Series are available HERE.)


Myasthenia Gravis Association Virtual WEBINAR- Thursday, August 15, 3:00-4:00 p.m. (Pacific) - REGISTER

Topic: Dr. Jeffrey Guptill provides an update on the Adapt Seron trial.

(YouTube recordings of previous MGA virtual webinsars are available HERE.)


San Francisco Support Group - Sunday, Aug 18, 10:00-11:30 a.m. Pacific REGISTER   Topic: TBD

Upcoming meeting dates in 2024:; Sept 29 REGISTER; Nov 17 REGISTER; Dec 29 REGISTER.  We meet about every 6 weeks on Sundays from 10:00 to 11:30 AM PT.  Zoom link is usually sent at the beginning of the month and/or the week before the meeting. For questions please reach out to Jessica Milanes at mgwarriorssf@gmail.com


Southern Oregon MG Support Group - Thursday, TBD, 6:30 pm - ZOOM TBD

Email cara.brown1@gmail.com for details

  

Conquer MG - Men’s Virtual MG Support Group - Date: Sept. 12, 6:30 – 8:30 pm (Central) 4:30 – 6:30 pm (Pacific) REGISTER

Future 2024 meetings:  November 14 (REGISTER)

This group meets online and is open to men who have MG, wherever they live. After registering (required), you'll receive a confirmation email containing information about joining the meeting. Leaders: Gary Jackson & Neurologist David Randall, DO, will be on hand for questions.  Or email info@myastheniagravis.org to let us know which meeting you want to attend and we'll send the virtual link.


PNW MG Support Group - Thursday, TBD, 6:00 pm - ZOOM  Topic: TBD


Myasthenia Gravis Association Virtual MONTHLY MEETUP - Monday,  TBD, 4:30-5:30 p.m. (Pacific) - REGISTER - TBD

Topic: TBD


Miastenia Gravis Grupo Internacional de Apoyo (Virtual International Spanish MG Support Group) - Saturday, September 14, 1 p.m. (Central) - REGISTER

In 2024 it will be on the second Saturday of the month, every other month, starting at 1pm (central time).  Info: contact Leah Gaitan-Diaz at lamgchampions@gmail.comClick date to register for upcoming Zoom meetings in 2024:  Nov 9

HERE is an article about this support group.


Georgia MG Support Group TBD, 3:30 p.m. (Pacific)  REGISTER TBD

Meetings are usually on the first Monday of each month.  For questions, contact Alexis Rodriguez at mggatalk@gmail.com

Topic: 


Caregivers Support Group - Date/Time: TBD 9:00 PM (Eastern) - Register in advance for this meeting. After registering, you will receive a confirmation email containing information about joining the meeting. For questions, contact Toni Gitles at tonigitles@gmail.com.    Meetings on the third Wednesday of the month, 9:00 pm Eastern Time.  See the article: MISTAKES CAREGIVERS MAKE AND HOW TO AVOID THEM


Sacramento Support Group - Saturday, TBD, 1:00 p.m.  REGISTER TBD


*NEW* Seronegative Support Group - TBD  Contact: snmggroup@gmail.com for more information.


 Virtual Meetings info for these and other MG support groups can be found on the MGFA website.


ANNOUNCEMENTS

(go to Announcements Archive)

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)

🔥During a Heat Wave (NWS) The National Weather Service's information page can help you get through any heat wave.🔥 

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

Two summers ago Brain&Life Magazine included a special summer issue and myasthenia gravis was the subject. This year they released, once again, another summer issue about MG. There are four article that are very well-written and informative:

Brain&Life Magazine is published quarterly by the American Academy of Neurology for the lay person and is always full of interesting articles regarding neurology and the brain. Best of all its hard copy version is FREE and mailed to you! Their website has all of their content and the page where you can subscribe to the free quarterly magazine. I highly recommend it.

Mike Stabile

Here is an article from Myasthenia Gravis News that describes a brand new and important resource for MGers everywhere and provided by the MGFA. This service has the potential to fill a hole in the care spectrum by offering many MGers much-needed, vital, and live help in dealing with their MG symptoms and challenges. Kudos to the MGFA! Also, we've put the official MGFA announcement here on this website under Resources/Help Line.

Be Prepared for a Hot and Smokey Summer and Fall

Exceptionally hot and dry summer and fall, along with a potentially big fire season, is forecast for the Western U.S. I'm a weather nerd and follow the long-term forecasts and science. If you live inland from the immediate coast, I recommend that you become aware now of the upcoming potential risks and dangers to which a person with myasthenia gravis might experience (e.g., heat, smoke, isolation, etc.)

I follow one weather expert in particular, Daniel Swain (PhD.), who hosts the Weather West website. More importantly, he produces an exceptionally good YouTube channel that supports his website. Yesterday he released possibly his best video ever, and it is a detailed explanation of this article's title. If you're at all interested in a scientific-based preview of the likely upcoming summer and fall, I recommend it. I know it's a long video, but if you stick to it, it will get increasingly informative and understandable as you continue.

Mike Stabile

  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!

Getting care from Medicare in a disaster or emergency (Medicare.com) For those of us in the MG community on Medicare, this could be valuable information.

The FLEX MG study is now entering Phase III and they're looking for subjects. From their site: "The FLEX Study is a Phase 3 clinical trial to assess the efficacy and safety of an investigational at home injectable drug as induction and maintenance therapy for adults with Generalized Myasthenia Gravis (gMG)."

HERE is the timeline of the study. If you're interested, REGISTER HERE.

Group member Frank Morrow found this superb article from Practical Neurology. As stated in its heading, it summarizes "Advances in testing and treatments for myasthenia gravis [which] are leading to more accurate diagnoses and improvements in symptom control for individuals with this rare chronic autoimmune disease." It's very readable and very current in content. I've duplicated two charts from it and put them, where applicable, in either the Common MG Drug Therapies or Open Clinical Trials sections of this website. Thank you, Frank!

NEWS

(go to News Archive)

Couples say they can't get married because of this government program's outdated rules (NPR) If you have MG and receive benefits from Supplemental Security Income (SSI) and are considering marriage, this is probably something you'll want to know.

Reliability and Validity of Cough Peak Flow Measurements in Myasthenia Gravis (ND) From the paper: "This study validated the reliability and validity of CPF measurements in assessing voluntary cough in patients with MG."

OMGMed: Advanced System for Ocular Myasthenia Gravis Diagnosis via Eye Image Segmentation (B) A potentially new computerized system to automate the diagnosis of Ocular Myastheia Gravis

Sugar substitute xylitol linked to higher risk of heart attack, stroke (Medical News Today) This breaking news is important for everyone, not just MGers.

Find & compare Medicare providers near you (Medicare.gov) "Trying to find a hospital nearby with doctors that accept Medicare? Or, perhaps you're planning to have surgery or are thinking about your future needs?"  This site will help you compare hospitals in your area.

More unofficial reports of shortages of Mestinon 180 SR (aka pyridostigmine 180 SR). (See my post in Announcements Archive.)

Immunovant positions IMVT-1402 as lead MG treatment candidate (Myasthenia Gravis News) Good News!! "Registrational clinical trials may begin in 2025"

FEATURED ARTICLES

(go to Articles Archive)

Finding and Evaluating Online Resources (NIH) Do you obtain health information from online sources? If so, how do you know if the information is reliable? This article might help you answer that question.

These Common Medications May Cause More Side Effects When It’s Hot Out (Verywell Health) We MGers tend to take lots of meds. Considering the current and upcoming hot weather, you might want to check this out.

What Does FDA Approve? (FDA) All our MG drugs must be FDA approved before our Neurologists can prescribe them. If you wonder how that approval process works, here are the answers, split into two articles: PART 1 and PART 2.

What Does It Take to Get to Remission? Group member Scott Hazel found this excellent article describing what remission in myasthenia gravis really means. I know that I frequently use this term when I'm between flare-ups. Instead, I should be using "minimal manifestations status".

Myasthenia gravis: Dealing with Heat and Hot Weather (myasthenia-gravis.com) As a very hot summer rolls in this year, we MGers must be so careful about excessive heat (and humidity) which can amplify our MG symptoms. Also see: What Extreme Heat Does to Your Brain (Verywell Health) and How does heat kill? (AP)

Prednisone and Your Gut

Your gut and its associated microbiome is a vital component (Healthline) of your health. The microbiome, in particular, plays an extremely important role (SciTechDaily) in many bodily functions. Prednisone (and similar corticosteroids), in particular, can have seriously negative consequences (NIH) on your gut's functions. It might be to your benefit as an MGer to learn what you can about actively supporting your gut's microbiome by updating your diet.

Does Surgical Removal of the Thymus Have Deleterious Consequences? (Neurology) Terrific, detailed article about the structure and function of the Thymus gland. Also analysis of thymomas and their surgical removal. Most important (for MG) is what are the suspected reasons how and why the thymus manufactures the antibodies to the Acetylcholine receptors (Anti-AChR antibodies).

Does It Take 30 Minutes to Digest Food? (MedicineNet) The amount of food in our stomach can affect MG drugs (among others). Factors such as the time food takes to leave the stomach, and its type, density and consistency, can affect a drug's absorption into the blood stream.

How to Evaluate Trustworthiness in Science (NIH) If you get (or want to get) your information from scientific articles and journals, like I do for MG information for this website, this might be something well worth reading. It explains how to read these sources of information.

Myasthenia Gravis: Creating a Plan for Your Treatment and Well-Being (WebMD) Lots of useful information on the subject