Southern California Myasthenia Gravis Support Group
Southern California Myasthenia Gravis Support Group
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Disclaimer: This website is volunteer driven and is a collection of resources, articles, and links, and is not sponsored by the MGFA.
Message from our Group Leader
Message from our Group Leader
Hello! Welcome to our website, established in 2023 by the Southern California Myasthenia Gravis Support Group. In 2024 we expanded to include the San Francisco MG Support Group. Earlier this year we partnered with the San Diego Support Group and, now we are proud to announce that the Sacramento-Sierra Support Group has joined!
We supply valid and reliable web links to quality MG content available on the internet. We provide information and resources to help you learn about your MG and make successful decisions regarding its management. Caregivers will also find useful information here.
We also deliver information about many upcoming virtual meetings of other MG support groups that also encourage the participation of any myasthenia gravis patients living anywhere.
The Southern California Myasthenia Gravis Support Group started in 2019 and has grown to over 100 members. We work with other MG support group leaders, patients, caretakers and medical professionals to foster relationships and collaborate with them to improve our connections and resources.
Below this message you will find links to many other (usually monthly) support groups’ virtual meetings. We encourage newly-diagnosed MG patients to attend as many group meetings as possible as they learn about their MG. In those meetings you will find compassionate, empathetic and helpful MGers and support group leaders, who will share their experiences and suggestions with you.
We do not give medical advice here, but instead strongly urge you to always discuss any changes you desire to make with your doctor. The more you learn from information sources, the better decision you and your doctor can make.
Please email your questions, comments, and suggestions regarding this site (including any pertinent web links), to mgsocalgroup@gmail.com.
Connie DiPasqua
Support Group Leader
Webmaster: Mike Stabile
Associate Webmaster: Gary Miller
Contact: mgsocalgroup@gmail.com
* Next SoCal MG Support Group Meeting *
* Next SoCal MG Support Group Meeting *
Saturday, June 14, 9:00-11:00 a.m. (PST) ZOOM
Meeting ID: 827 8084 0705 Passcode: 497489
Hosted by: (tbd)
Topics: "Maximizing your visits with your healthcare provider", presented by Cathy Ellis, PEM Alexion.
Also: "Breath. Move. Thrive. is an inclusive adaptive yoga program", presented by Deborah Vick
Contact/Request copy of meeting notice: mgsocalgroup@gmail.com
(Note: SoCalMGGroup members automatically receive these notices from mgsocalgroup@gmail.com.)
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Future meetings
Meetings are held monthly on the 2nd Saturday of each month at 9:00-11:00 a.m. Pac.
DATES: : July 12, Aug 9, Sept 13, Oct 11, Nov 8, Dec 13; 2026: Jan 10, Feb 14, Mar 14
For all future meetings: ZOOM, Meeting ID: 837 8922 0613, Passcode: 448688
mg flyer june 2025.pdfOther Upcoming MG Virtual (Zoom) Meetings of Interest
Other Upcoming MG Virtual (Zoom) Meetings of Interest
Anyone anywhere may join any meeting and all are free. Listed chronologically.
ZOOM BEGINNER'S GUIDE / Also: ZOOM 101
Virtual Meetings info for MG support groups can also be found on the MGFA website.
To list your MG Support Group virtual meetings here, contact mgsocalgroup@gmail.com
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MGFA Virtual WEBINAR - Mon., May 19, 12:30 p.m. (Pac) ZOOM
Topic: Registered Dietitian / Nutritionist Kathryn McWaters will cover key nutrition strategies for managing MG. The presentation will cover a range of topics, including inflammation management, the roles of key nutrients for individuals with MG, supplement safety, and tips for troubleshooting eating difficulties and gastrointestinal symptoms related to MG.
🔥🔥 NEW GROUP Sacramento-Sierra MG Support Group - Tuesday, May 20, 6:00 p.m. (PT) - ZOOM - Topic: Share & Care
Meetings are monthly on the 3rd Tuesday, 6:00-7:30 p.m.
MGA - MUSCLE MAKERS- Wed., May 21, Noon (pacific) - ZOOM
A virtual community for individuals with MG to bring your hobbies to life. A reoccurring monthly group for casual conversation while crafting. Bring your craft and creativity to your screen and connect with others.
Caregivers Support Group - Wednesday, May 21, 6:00 p.m. (Pacific) - Register in advance for this meeting. After registering, you will receive a confirmation email containing information about joining the meeting. Contact Toni Gitles at tonigitles@gmail.com. Meetings on the third Wednesday of the month, 9:00 pm Eastern Time.
Conquer MG Women's Virtual Support Group - Thurs., May 29, 4:00 p.m.(Pacific) - ZOOM
Topic: Conquer MG Medical Advisory Board Member, Dr. Diana Mnatsakanova will be with us at this virtual meeting to take your questions.
Future Dates (Thursdays at 6:00 p.m.): August 28 ZOOM, November 6 ZOOM
Myasthenia Gravis Association Virtual MONTHLY MEETUP - Tuesday, June 3, 4:30-5:30 p.m. (Pacific) - ZOOM
Topic: Henry Kaminski of The George Washington University discusses the different antibody types associated with myasthenia gravis.
Conquer MG - ANYWHERE MG Virtual Support Group - Thursday, June 12, Noon-1:30 pm (Pac)
ZOOM (for all 2025 dates)
2025 Meeting Schedule: Jul. 10, Aug. 14, Sep. 11, Oct. 9, Nov. 13, Dec. 1. These meetings are open to all MG patients and caregivers, held monthly on the 2nd Thursday, Noon-1:30 pm (Pac.)
View The Full 2025 Conquer MG Support Group Meeting Schedule.
Contact info@myastheniagravis.org to receive email notices of virtual meetings and other Conquer MG news.
Here is the List of Conquer MG Support Groups. YouTube recordings of previous Conquer MG meetings
PNW MG Support Group of Southern Oregon - Thursday, June 12, 6:30 pm (pacific) - ZOOM
Meets 2nd Thursday of each month. ZOOM (for all months) link for iCalendar users (.ics file download) Email Cara Brown: Cara.brown1@gmail.com for logon details.
San Francisco Support Group - Monday, Jun 16, 5:00-6:30 p.m. Pacific ZOOM
We (usually) 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. Questions: contact Jessica Milanes at mgwarriorssf@gmail.com
Miastenia Gravis Grupo Internacional de Apoyo (Virtual International Spanish MG Support Group) - July 12, 1:00 p.m. Central.
Meetings will be on the second Saturday of the month, every other month, starting at 1pm (central time).
Future meeting dates: September 13, November 8.
Info: Leah Gaitan-Diaz at lamgchampions@gmail.com for Zoom Registration. HERE is an article about this support group.
U N S C H E D U L E D
Conquer MG - Webinar - Wed., TBD, 2:30 p.m. (pacific) - ZOOM-TBD Topic:
Watch YouTube videos from Conquer MG
Georgia MG Support Group - Monday, June 2, 3:30-5:00 p.m. (Pacific) ZOOM Topic: tbd.
Our meetings are the first Monday of the month except for July and September.
For questions, contact Alexis Rodriguez at mggatalk@gmail.com MG Georgia website
MGFA Research Webinar Series: - TBD - ZOOM-TBD
Topic:
Myasthenia Gravis Association Virtual WEBINAR - Mon., tbd, 4:30 p.m. (Pac), ZOOM-tbd
Topic: Advocacy updates, Medicaid, Access to Care
YouTube recordings of previous MGA virtual webinars are available HERE.
MGA Calendar of Events (including virtual meetings)
Phoenix MGFA Monthly Support Group - Tuesday, tbd, 5:00-6:30 p.m. (PAC time) ZOOM-tbd
Topic: tbd
Future meetings in 2025: Every month (except Dec.) on the last Tuesday of the month at 5:00PM AZ time (& Pacific during DST)
PNW MG Support Group - Thursday, June 19, 6:00 pm (pacific) - ZOOM-tbd
Topic: PNW MG Patients and Friends Group Meeting
Meets 3rd Thursday of each month. Led by Zach McCallum. Email pnwmgsg@gmail.com for details.
Seronegative Support Group - Contact: snmggroup@gmail.com for more information.
Southern Oregon MG Support Group - Thursday, TBD, 6:30 - 8:30 p.m. ZOOM
(email cara.brown1@gmail.com for meeting details) Future dates: TBD 6:30 - 8:30 PM (Pacific)
Stanford Support Group Meeting - Tuesday, Aug 12, 5:30 p.m. (PST) ZOOM-tbd
Upcoming meeting date: @: Tuesday, Aug 12, TBD.
Meets the 2nd Tuesday of every Feb., May, Aug. and Nov.
**Note: Slide decks of previous meetings can be downloaded HERE.
If you know of other informative and helpful virtual (ZOOM) MG meetings to include in this list, please email us at mgsocalgroup@gmail.com.
Saturday, May 31, 2025
9:00 a.m. to 1:00 p.m. (Pac)
Irvine Marriott
18000 Von Karman Ave.
Irvine , CA 92612
MG-Awareness-Month-Toolkit-2025.pdfMG Walk Southern California
Saturday, October 4, 2025 at 10:00 a.m.
Miles Square Park
16801 Euclid St.
Fountain Valley, CA 92708
🔥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.)
Living-Rare-Study-Backgrounder.pdfSoliris biosimilar Epysqli now available in US for adults with gMG (Myasthenia Gravis News) " ...Biosimilars are highly similar in terms of purity, safety, and efficacy to a brand-name biological medicine that serves as a reference product. They are akin to generics for traditional medicines and are typically marketed at a more affordable price than the reference product... Epysqli will be available at a 30% lower price compared with Soliris, making it one of the most cost-saving Soliris biosimilars available in the U.S."
Video of March, 2025 So. Cal. MG Group Monthly Meeting - Kristin Neusel, Patient Advocacy Liaison from UCB Pharmaceuticals, presents a fun and interactive presentation on health & wellness for the MG community! Kristin is a Registered Dietitian, Certified Diabetes Care & Education Specialist, and Certified Personal Trainer who has worked in rare disease for nearly a decade. Use passcode: &UYtfa3u
🔥🔥 Reprogramming the Immune System to Halt MG | Webinar with COUR (Conquer Myasthenia Gravis - YouTube Video) Excellent video explaining the COUR Nanoparticle clinical study. "In this webinar, Dr. Paul M. Peloso, Chief Medical Officer at COUR Pharmaceuticals, addresses our MG community, providing an insightful update on the ongoing clinical trial of CNP-106, COUR’s promising investigational treatment for MG."
Were You Diagnosed With Seronegative MG diagnosis? Consider joining this group. (Myasthenia Gravis News)
Preparing for Surgery: Myasthenia Gravis and Anesthesiology (YouTube / MGA) Excellent video presentation by anesthesiologist that will likely answer almost any question you might have about surgical anesthesia and MG. Definitely recommended if you're planning to have surgery or any other procedure involving anesthesia.
🔥🔥 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 Association - 64th Annual Meeting & Educational Seminar (video)
Myasthenia Gravis Holistic Society - A holistic approach to treating MG
Go To ANNOUNCEMENTS ARCHIVE
MG NEWS
MG NEWS
(go to News Archive)
Dianthus Therapeutics Completes Enrollment of Phase 2 MaGic Trial of DNTH103 in Generalized Myasthenia Gravis With Top-Line Results Expected in September (Global Newswire) "DNTH103 is an investigational, clinical-stage, potent monoclonal antibody engineered to selectively target the classical pathway by inhibiting only the active form of the C1s protein..."
It Had to Happen: CAR T-Cell Therapy for Autoimmune Disease Comes With Side Effects (Medpage Today) Something to keep an eye on, especially if you're considering entering a CAR-T clinical study for MG.
Vyvgart outperforms standard treatment in real-world study (Myasthenia Gravis News)
🔥 🔥 🔥 BREAKING 🔥 🔥 🔥
FDA Approves FcRn Blocker Nipocalimab for Broad Forms of Generalized Myasthenia Gravis (Neurology Live)
From the article:
"Key Takeaways:
Nipocalimab, an FcRn blocker, is approved for gMG in patients 12+ with anti-AChR or anti-MuSK antibodies.
The VIVACITY-MG3 study showed significant improvements in MG-ADL and QMG scores with nipocalimab.
Nipocalimab is the second FcRn blocker for gMG, following rozanolixizumab, and offers broad patient applicability.
IMAAVY withMe program supports patient access, aiming for minimal cost per infusion.
Common adverse events include respiratory infections, peripheral edema, and muscle spasms.
Myasthenia Gravis Association presents:
A guest speaker from MDA (Muscular Dystrophy Association), who has extensive experience with Medicaid, reviews the current state of Federal budget funding proposals currently being considered by Congress. Significant reductions in Medicaid's budget (which determines the financial assistance Medicaid provides to millions of beneficiaries including much of the MG population) are being proposed. We highly recommend that all Medicaid recipients watch this presentation.
Mortality Risk in Patients with Myasthenia Gravis (Frontiers in Neurology) "...our study suggests, by using reliable disease age- and sex-matched control groups, higher mortality in MG patients compared to disease controls, especially in the first 5 years of the disease... Our data also showed that mortality has not significantly changed since the beginning of the century, despite treatment progress, and the COVID pandemic...."
Telitacicept found to reduce gMG severity in Phase 3 trial in China (Myasthenia Gravis News)
Go To NEWS ARCHIVE
Exercise and myasthenia gravis (oaepublish.com) "Traditionally, it was thought that exercise might exacerbate symptoms in MG patients; however, with a deeper understanding of MG and the publication of relevant research findings, it is now believed that moderate exercise can benefit stable MG patients."
Healthy Ways to Overcome Caregiver Burnout (Brain&Life) If you care for an MGer, this could be very useful information.
Tips for Living with Myasthenia Gravis (Medium) An MGer gives personal tips on avoiding some flare-up triggers. The section on Heat and Humidity has lots of tips for staying cool in the upcoming summer heat.
What Patients Don’t Say and Physicians Don’t Ask: A Needs Assessment in Myasthenia Gravis... (Springer) Georgia MG Support Group Leader Alexis Rodriguez contributed to this article that examines the need for improved communication between MG patient and doctor.
Vaccinations and Myasthenia Gravis: Current Recommendations (myasthenia-gravis.com)
🔥 Myasthenia gravis and the elderly (ACNR) Sent in by group member Frank Morrow
Advanced Imaging Reveals Mechanisms That Cause Autoimmune Disease (UC San Diego Today)
See examples (from Medscape) of what information is available for doctors who treat MG patients:
12 [types of] Medications That Don’t Mix Well With Coffee (VeryWell Health) Most MGers take at least one type of the medications listed in this article.
Go To ARTICLES ARCHIVE
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