February 2024

MYASTHENIA GRAVIS SO CAL SUPPORT GROUP

mgsocalgroup.com

HELPFUL ARTICLES & LINKS FROM SUPPORT GROUP MEMBERS

Clinical Trials

Biotech company working on CAR-T treatments for MG (https://kyvernatx.com/). Here is a link to all the clinical trials going on right now: https://myasthenia.org/Research/Clinical-Trials

Myasthenia Gravis: The Musical!

Fellow support group member, Jane Robbins, has written a book! Check it out with the link below:

https://www.amazon.com/Myasthenia-Gravis-Hysterical-Poetical-25-Month/dp/1088046363/ref=tmm_pap_swatch_0_encoding=UTF8&qid=&sr=

IVIg

https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures/intravenous-immunoglobulin-ivig

Webinar on Fatigue

https://www.youtube.com/watch?v=cpQbG7bEOMU

Webinar on Stress Management

https://www.youtube.com/watch?v=LCwnqlw_bcY

Southern CA Support Group Meeting

Date: Saturday, March 9 from 9:00 to 11:00 AM PT

Speaker and Topic: Dr. Muppidi, Improve MG symptom tracking app

Contact: Connie, mgsocalgroup@gmail.com

Website: mgsocalgroup.com or  https://sites.google.com/view/mgsocalgroup/home-page

MGFA 2024 National Patient Conference

The annual MGFA National Patient Conference is the largest and most completegathering of the MG Community. The conference features MG research information and updates, informative discussions with patients and community members in the MG space, news about MG treatments and discoveries, and many exciting educational topics to help you and your family better manage your MG journey. Registration is free this year!

Date: April 28-30, 2024

Location: Westin Tampa Waterside, Tampa, FL

More Information and Registration:

https://myasthenia.org/Events/2024-national-

patient-conference-tampa-f

2024 MGFA Orange County / Los Angeles Area Community Health Fair

MGFA’s free Community Health Fairs are designed to help you or your loved one navigate MG. Hear from and talk with medical professionals, access educational and wellness resources, and meet others in the MG community. Connect with each other, share stories and guidance, and learn more about managing this disease.

When: Saturday, June 08, 2024 10:00 AM - 2:00 PM PT

Where: Irvine Marriott; 18000 Von Karman Ave. Irvine, CA 92612

Registration is Free: https://myasthenia.givevirtuous.org/Event/2024-orange-county--los-angeles-area-community-health-fair/Tickets

Join Support Groups Across the US

Many support groups are still meeting virtually and you can attend their meetings regardless of where you live! Please use the link below for a full list of support group

meeting dates.

https://myasthenia.org/MG-Community/Find-MG-Support-Groups

Methotrexate

Methotrexate in generalized myasthenia gravis: a systematic review - PubMed (nih.gov)

Myasthenia Gravis Therapy Methotrexate Reins in Harmful Autoantibodies (myastheniagravisnews.com)

Pain and MG?

Pain & MG: Exploring the Connection (myasthenia-gravis.com)

Links to Alexion and Argenx's patient sites with great info...

Here are links to the One Source Site from Alexion (manufacturer of Solaris and

Ultomiris) that provides resources for us:

Ultomiris: Alexion OneSourceTM

Solaris: Alexion OneSourceTM

Argenx also has great support tools, their site resource link is here: Myasthenia Gravis

Farm Fresh Food - California Patients only

Myasthenia Gravis Foundation of America > MG Community > Farm Fresh to You

Ocular MG

MGFA Webinar Series: Ocular Myasthenia Gravis (youtube.com)

Drugs to Avoid

Cautionary Drugs (myasthenia.org)

Bipap Machine and MG

Ask your doctor, the MGFA site has BiPap information listed on the following pages:

Emergency Management for First Responders (myasthenia.org)

Emergency Management (myasthenia.org)

MG Emergencies (myasthenia.org)

October

Coping with MG Book https://myasthenia.org/MG-Community/Blog/new-book-by-a-leading-doctor-will-help-you-cope-with-myasthenia

Disability Services Service Locator: Great resource, covers all counties in CA and many different types of services https://aging.ca.gov/Find_Services_in_My_County/

At Home Fall Prevention Program https://aging.ca.gov/Programs_and_Services/Dignity_At_Home_Fall_Prevention_Program

Improve MG App - Dr. Muppidi's app is a great way to help track your symptoms and even has an audio and video option! Dr. Muppidi at Stanford released an app that helps patients track their symptoms, ADL scores, and more The app is great because you can record audio and video to show to your doctors. The app is called "Improve MG" and it's available in the app store for both Apple and Android. You can track your symptoms and record audio and video clips to easily email to whomever you'd like. You can also find this information on the MG SoCal Group website @ www.mgsocalgroup.com

UCB announces U.S. FDA approval of ZILBRYSQ(R) (zilucoplan)  For the treatment of adults with gMG and AChR antibody positive. To learn more, visit www.ZILBRYSQ.com and see the ZILBRYSQ Medication Guide

Medications to Avoid  https://myasthenia.org/Newly-Diagnosed/Cautionary-Drugs-for-MG-Patients

Prednisone Information - https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures/prednisone

Stanford Support Group- MDA Engage Symposium

When: Saturday, November 11 from 9:00 AM to 4:30 PM

Where: Paul and Mildred Berg Conference Center, 291 Campus Drive, Stanford, CA 94305

Register: There is no cost to attend, but registration is required. Breakfast and lunch will be provided.

https://www.mda.org/care/community-ed/engage-symposiums/2023/california

Join us for this one-day educational event for people living with a neuromuscular disease (NMD) and their loved ones. Each symposium is focused on increasing disease understanding, navigating critical life transitions, and supporting access to independence.

Stanford Support Group Meeting   When: Tuesday, November 14 at 6:30 PM

Topic and Speaker: Updates from AANEM and MGFA Scientific Session, Dr. Neelam Goyal

Meeting Link: https://www.onlineregistrationcenter.com/MG14NOV2023

Meeting Dates: https://stanfordhealthcare.org/events/myasthenia-gravis-support-group.html

PNW Support Group - When: Saturday, November 18 at 11:00 AM - Topic, Host: TBA, Pierre Clement

Meeting Link: https://www.google.com/url?q=https://zoom.us/j/5877441065?pwd%3DaVh4K0hheC9nanVlWTFSc0grOFk1UT09&sa=D&source=calendar&usd=2&usg=AOvVaw2ZvRaD5FVrWxjQagXPiFcg

NEW Seronegative Support Group - When: Saturday, November 18 from 2:00 to 3:30 PM ET

Meeting Link: https://us06web.zoom.us/j/7686539760 - Contact: snmggroup@gmail.com

Facebook: https://www.facebook.com/groups/899235894572163

Spanish Language MG Support Group - When: Saturday, November 18 at 2:00 to 3:30 PM ET

Contact: Leah Gaitan-Diaz lamgchampions@gmail.com

MGFA Wellness Webinar - When: Thursday, December 7 at 1:00 PM

Topic and Speaker: Know Your Antibody, Dr. Srikanth Muppidi of Stanford

Register at: https://us06web.zoom.us/webinar/register/WN_f4k29GiiTmS65Otds9uMsw#/registration

Southern CA Support Group - When: Saturday, December 9 from 9:00 AM to 11:00 AM

Topic and Speaker: Nutrition, Mike Glawe, Patient Educator Manager with Alexion

Meeting Link: https://alexion.zoom.us/j/98478736206?pwd=dGQ3eGNXekVnNTE0V2NZdGpobmpMQT09

Contact: Connie DiPasqua mgsocalgroup@gmail.com

Caregivers Support Group - When: Wednesdays and Saturdays, Dec 9 and 13 - Contact: Toni Gitles tonigitles@gmail.com

Join Support Groups Across the US - Many support groups are still meeting virtually and you can attend their meetings regardless of where you live! Please use the link below for a full list of support group meeting dates.

https://myasthenia.org/MG-Community/Find-MG-Support-Groups

gMG ADULT TREATMENT APPROVAL - Great news for the MG community. We have more choices in regards to MG treatments. Read, educate and ask your doctor.  UCB announces U.S. FDA approval of ZILBRYSQ® (zilucoplan) for the treatment of adults with generalized myasthenia gravis: https://www.ucb-usa.com/stories-media/UCB-U-S-News/detail/article/ucb-announces-us-fda-approval-of-zilbrysq-zilucoplan-for-the-treatment-of-adults-with-generalized-myasthenia-gravis

MYASTHENIA GRAVIS NEWSLETTER - Myasthenia Gravis Newsletter covers recent MG forums, postings that maybe of interest to you, announces major drug research advances in MG along with other helpful information. The newsletter comes out weekly. Check out the site and maybe subscribe to the available newsletters at https://myastheniagravisnews.com/

TO FIND A MG SUPPORT GROUP NEAR YOU - Go to MYASTHENIA GRAVIS FOUNDATION OF AMERICA > MG Community > Find MG Support Groups:  https://myasthenia.org/MG-Community/Find-MG-Support-Groups

MG RELATED MERCHANDISE - Amazon: https://www.amazon.com/s?k=myasthenia+gravis

Medical bracelet: https://www.amazon.com/Dolceoro-Medical-Alert-Bracelet-Stainless/dp/B09QPC66PY/ref=sr_1_29? crid=2HRQHD3RR1FND&keywords=dolceoro%2Bbracelet&qid=1688133651&sprefix=Dolceoro%2Caps%2C126&sr=8-29&th=1

MEDICATIONS - List of drug interactions and meds not to take are on our website under Resources;.

link is: https://sites.google.com/view/mgsocalgroup/resources/drug-cautions

RESTING When you are resting, it is because the body is worn out.  REMEMBER: Resting is NOT wasting time or the day doing nothing ... you are doing exactly what you needed - YOU ARE RECOVERING!!!

MG DOCTORS AND PROFESSIONALS RECOMMENDED BY MEMBERS: https://sites.google.com/view/mgsocalgroup/resources/neuromuscular-neurologists-and-other-mds-recommended-by-group-members

MG SO CAL SUPPORT GROUP WEBSITE - Check out our website: mgsocalgroup.com. You will find lots of interesting and useful MG information along with dozens of links to MG websites and articles. Announcements and meeting schedules are kept updated as well. A section is devoted to members like you if you'd like to write articles about your MG experiences, things that you have found to help you manage your symptoms, relevant stories, helpful tips, which will help other MGers. Send your questions, comments, suggestions and articles to our group mailbox, mgsocalgroup@gmail.com

EMERGENCY MANAGEMENT - Very useful guide to give to first responders (paramedics) and the Emergency Room or other caregivers when you have a severe MG exacerbation (i.e., MG Crisis).

The link is: https://myasthenia.org/Portals/0/Emergency%20Management%20for%20First%20Responders.pdf

Emergency Binder - Suggestion to create and keep by front door an emergency binder. Some items to include in the emergency binder are: the MGFA alert card, list of medications and all pertinent MG information you have on hand. The Emergency Alert Card is from MGFA website at myasthenia.org: 

https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures/emergency-alert-card. This can also be put in patients' and caregivers' wallets, purses, and glove boxes.  Also keep the list of cautionary drugs and the emergency preparation list, both are helpful to have. We suggest a binder with all info by the front door to grab on the way out if an EMT needs to assist. I have also attached the brochure for emergency medical techs so patients can add that to their packet or binder. This page on the MGFA website has some good information about emergency

preparedness as well: MG Emergencies This page on our MGFA site shows all kinds of brochures and information available for download. About halfway down the page, there are also great tips on emergency management of a crisis, tips before going to the hospital, and more: https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures

Povetacicept found superior to current MG treatments: Early study

https://myastheniagravisnews.com/news/povetacicept-found-superior- current-treatments-early-study/ 

August

EMERGENCY MANAGEMENT

Very useful and thorough guide to give to first responders (paramedics) and the Emergency Room or other caregivers when you have a severe MG  exacerbation (i.e., MG Crisis).  The link is: 

https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures/emergency-management-for-first-responders

Print and give copies to those (family members, friends, caregivers) you would likely ask for help at a difficult time.  Often during an MG crisis that includes breathing difficulties, one is unable to speak adequately enough to communicate potentially life-saving information like this. If you have a caregiver then be sure they always have a copy on hand, and when you're not home carry a copy on your person or at least in your car, and also when traveling away from home.

MEAL PREPARATION

The Family Freezer meal prep program; the link is: https://thefamilyfreezer.com/log-in-freezer-meal-pro-member-login/

To access the site, click on above link and scroll down to the bottom and select “Home Page”. From there you can watch a video and sometimes sign up for a free class.

VITAMINS & MINERALS GUIDE

Terrific article from Harvard University which has a 14 page summary you can print (7pages double-sided) and use it as a reference when you consider adding vitamin/mineral supplements to your diet. Link:

https://www.helpguide.org/harvard/vitamins-and-minerals.htm

MG RELATED MERCHANDISE

Amazon: https://www.amazon.com/s?k=myasthenia+gravis

Medical bracelet:

https://www.amazon.com/Dolceoro-Medical-Alert-Bracelet-Stainless/dp/B09QPC66PY/ref=sr_1_29crid=2HRQHD3RR1FND&keywords=dolceoro%2Bbracelet&qid=1688133651&sprefix=Dolceoro%2Caps%2C126&sr=8-29&th=1

MYASTHENIA GRAVIS NEWSLETTER

Myasthenia Gravis Newsletter covers the latest postings to the MG forums that you may be interested in subscribing to. More importantly, it announces major drug research advances in MG along with other helpful information. The newsletter comes out weekly.  The below also has information regarding the FDA approval of

rozanolixizumab, known as Rystiggo, to treat gMG.  Check out the site and maybe subscribe to the available newsletters at https://myastheniagravisnews.com/.  You may find that it is one of the better MG sites

BEATING THE HEAT

3 tips to help you beat the heat, even with myasthenia gravis | Myasthenia Gravis News

The Chill Towel, Pet Mat, and Collar Fan are all recommended by our attendees:

Frogg Toggs iCOOL® Cooling Towel: Size 26" X 17" - Walmart.com

Dog Cooling Mat Summer Breathable Ice Pads For Dogs Cat(Blue) - Walmart.com

Hanging neck USB charging fan lazy portable small fan student white-collar sports leapless hanging neck fan - Walmart.com

DIET

Some of us have seen tremendous improvement by either cutting out sugar, processed foods, meat, and the Keto diet.  The overall consensus was to listen to your body and track how you feel after you eat. If you feel horrible, maybe don't eat that again. :)

SALT SUBSTITUTE:  NoSalt Original Sodium-Free Salt Alternative, 11 oz - Walmart.com

* Make sure to consult your physician if you make any major diet change.

DOCUMENTARIES THAT MAY BE OF INTEREST

Game Changers

The Magic Pill

Cowspiracy 4K - Planet Climate Change - BEST Vegan Documentary Film [Complete Full Version] [2023] - YouTube

INSURANCE DENIAL

Make sure if you get a denial that you appeal the denial.  Ask for the information on who denied your claim-are they qualified to deny.  Ask your physician to request a Peer to Peer discussion.  If you have Medicare, ask to have it run through both Medicare D and Medicare B for approval.

NATIONAL LIBRARY OF MEDICINE (AKA) PUB MED FOR ARTICLES ABOUT MYASTHENIA GRAVIS

myasthenia gravis - Search Results - PubMed (NIH.gov)

ASSISTANCE FOR MEDICARE COVERAGE

The Assistance Fund (tafcares.org)