Monthly Recaps from Group Leader
Monthly Recaps from Group Leader
(Arranged chronologically, newest on top.)
Embedded Files
2025
2025
MG HELPFUL ARTICLES SUMMARY_082025.pdfMG HELPFUL ARTICLES SUMMARY_062025.pdfMG HELPFUL ARTICLES SUMMARY_May 2025.pdfMG HELPFUL ARTICLES SUMMARY_042025.pdfMG HELPFUL ARTICLES SUMMARY_032025.pdfMG HELPFUL ARTICLES SUMMARY_022025.pdfMYASTHENIA GRAVIS
SO CAL SUPPORT GROUP
HELPFUL ARTICLES & LINKS
Nov-Dec-Jan
2024/2025
MG SOCAL SUPPORT GROUP MEETING
Mark your calendars for March 2025!
Please join Kristin Neusel, Patient Advocacy Liaison from UCB Pharmaceuticals, as she 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. Join in on the fun to learn more about health and nutrition.
DATE & TIME: Saturday, March 8, 2025 - 9:00 am to 11:00 am PT
Join Zoom: https://us06web.zoom.us/j/87095888015?pwd=hDFu5ITUrHnmxNadLEvXE0Kzf4PFHl.1
Meeting ID: 870 9588 8015
Passcode: 321655
CONTACT INFORMATION: mgsocalgroup@gmail.com
JOIN SUPPORT GROUPS ACROSS U.S.
Many support groups are still meeting virtually and you can attend their meetings regardless of where you live! See the link below for the full list of MGFA support groups and meeting dates:
https://myasthenia.org/Living-With-MG/Find-Support/Find-MG-Support-Groups
MGFA COMMUNITY HEALTH FAIR - Bay Area - February 15
Jessica San Francisco Myasthenia Gravis Support Group Leader, MAYA Lead Volunteer,
Community Health Fair Lead Volunteer is heading the health fair held at the Sheraton Palo Alto Hotel (625 El Camino Real, Palo Alto, CA, 94301). The date and time are Saturday, February 15 from 9:00 AM to 1:00 PM. Registration for the event and parking are free, and light breakfast will be provided. We will have Dr. Sri Muppidi of Stanford present on "Treatment Options of MG" and Dr. Katherine Clifford of Sutter Health present on "Taking Care of Yourself with MG". The presentations will be at 10:00 AM and 11:00 AM, and the booths will be open the entire time.
You can register at https://myastheniagravis.givevirtuous.org/Event/2025sfchf. If you will be coming with your family/friends, please register each person so we can be sure to have enough food and refreshments.
MGFA PATIENT CONFERENCE 2025 - Phoenix - March 30-April 1
The 2025 MGFA National Patient Conference is March 30, 2025 - April 1, 2025 at Arizona Grand Resort & Spa; 8000 South Arizona Grand E, Phoenix, AZ 85044. Members are interested in ride share and/or room sharing. If interested send email to: mgsocalgroup@gmail.com and blast email will be sent to members. Kim Vigil, MG Phoenix Support Group Leader is part of the steering committee to help plan the 2025 National Patient Conference. For more information, email mgkimv@gmail.com.
For those attending the Phoenix MG Conference next month ….Mike Glawe with Alexion is doing a patient program with dinner on 3/29 the night before the MGFA event starts. Attached is the invite. It’s a great Mexican food Restaurant that’s located on the property of the hotel where the MGFA conference will be held. Any questions please reach Mike at mike.glawe@alexion.com.
MGFA SO CAL WALK … SPREAD THE WORD … MGFA So Cal Walk site is up and accepting registrants! October 4, 2025 at Mile Square Park in Fountain Valley. Here is the direct link to the walk!
POTENTIAL NEW DRUG FOR MuSK & LRP4
PAN FOUNDATION INSURANCE FUND FOR MG
The PAN Foundation opened a new myasthenia gravis health insurance premium financial assistance program, providing up to $2,600 to help eligible patients pay for their out-of-pocket health insurance premium costs. More information at
https://www.panfoundation.org/pan-launches-insurance-premium-fund-for-myasthenia-gravis
MG DRUGS SIDE EFFECTS
Discussion of various MG drugs and their side effects: spoke about Repatha injectables, CellCept, Ritxan, and Ultimoris
MY MG STORY BY RICH SCHMITTDIEL
MG Story of one of today’s participants, Rich Schmittdiel, is posted on our website at: https://sites.google.com/view/socalmggroup/so-cal-support-group/articles-by-members?authuser=0#h.qn5bkvtsfzsl
TRIALS
Andrea Divis, San Diego MG Support Group Leader spoke of the trials at the Neurology Center of Southern California and offered assistance if more information is needed about the trials, please feel free to contact her at mgsandiegogroup@gmail.com
Here’s the website for the center:
https://profoundresearch.io/trials/myasthenia-gravis
https://clinicaltrials.gov/study/NCT06414954?intr=NMD670
COUR Trial
Mike Stabile talked about the COUR Trial, an investigational drug, for people with Myasthenia Gravis. The study helps determine if CNP-106 can help improve your MG symptoms by reprogramming your immune system. More information can be found on their website at https://courpharma.com/our-clinical-trials/cnp-106-clinical-trial-myasthenia-gravis/
COUR webpage for myasthenia gravis: https://courpharma.com/our-clinical-trials/
Reprogramming the Immune System to Halt MG:
ENCOURAGEMENT
Lynn and Gary encourage themselves with a daily montra … “Acceptance and Gratitude” … learn to accept and grateful for learnings and all things.
QUICK HELPFUL LINKS for easy access to tools that are super helpful:
GOOD SOURCE OF MG VIDEOS: https://www.youtube.com/@mgakc/videos
MEET PHYSICAL THERAPIST LIZ PLOWMAN: https://www.youtube.com/results?search_query=liz+plowman
Meeting Topic Suggestions:
Walking Asymmetry with Apple Health Check coordinates with MyChart portal. It’s a great app to monitor walking style, format and is a preventative measure to ensure and assist MGers with walking. It can help avoid tripping by monitoring and alerting the user of dragging or droopy (lazy) feet.
Presenters for Car-T Cell and COUR Trial requested by members
Overview of drug treatments: COUR Trial, new and pipeline, current, upcoming, off-label treatments > Dr. Habib or Dr. Macwan
Have a doctor or pharmacist discuss Prednisone’s side effects, explanation of drug, why it affects the body, what are the alternative medications
Presentation of Myasthenia Gravis
Physical Therapy of MGers
Dental MG Specialist
2024
2024
August - November
MYASTHENIA GRAVIS
SO CAL SUPPORT GROUP
HELPFUL ARTICLES & LINKS
August - November 2024
LATEST FDA APPROVED TREATMENTS
Here are treatments in clinical trials and those almost in clinical trials. Go to myasthenia.org and clinicaltrials.gov and search for myasthenia gravis trials.
NEWSLETTERS WITH VERY GOOD INFORMATION
Myasthenia Gravis News <info@myastheniagravisnews.com>
Med-Live
Rare Patient Voices
SUPPORT GROUP MEETINGS
December 12th meeting @ 6:30 pm: contact Cara Brown at cara.brown1@gmail.com
December 14th meeting @ 9:00 am: contact mgsocalgroup@gmail.com
Join Zoom Meeting
https://us06web.zoom.us/j/88275992140?pwd=r1fHsZ62byRH6OZSur4DsdF85JkF54.1
Meeting ID: 882 7599 2140
Passcode: 101299
January 2025 Meetings: Mark your calendars for January 2025!
Thursday, January 9th, 6:30 pm - Cara.brown1@gmail.com
Thursday, January 16, 6:00 pm - Cartesian medical director, Milos, will present on on the Descartes-08 results from their their Pase2b trial and will talk about their Phase 3 clinical trial, which they expect to start during the first half of 2025. Interesting info; Descartes-08 (Car-T) has had great success in sympton reduction.
Meeting ID: 881 6544 4583 Passcode: 796824
https://us06web.zoom.us/j/88165444583?pwd=Qw4UrBH1PFAxVFSuirwGQBXJKzNOIA.1
Join Support Groups Across the US
Many support groups are still meeting virtually and you can attend their meetings regardless of where you live! See the link below for the full list of MGFA support groups and meeting dates:
https://myasthenia.org/Living-With-MG/Find-Support/Find-MG-Support-Groups
2025 MGFA National Patient Conference is in Phoenix March 23 - 25
Kim Vigil , MG Phoenix Support Group Leader is part of the steering committee to help plan the 2025 National Patient Conference. More details and registration will be available at a future date.
EOSINOPHILIC AND RARE DISEASES COOPERATIVE offers a free HEAT kit to help MG patients during doctor's office, hospital, ER and UC visits. Check out their website and maybe send for their Kit and sign up for their newsletter.
UCB presentation about a new treatment option called Rystiggo
Jessica Milanes, MG SF Support Group Leader had Alexandria Harrold from UCB present about a new treatment option called Rystiggo. To view the recording of the presentation, use the link and password below:
Passcode: 88w6hC!n
Heat with MG
- General Info: https://myasthenia.org/About-MGFA/MGFA-Publications/MGFA-MG-Community-Insider-Blog/beating-the-heat-during-summer-months
- Cooling Vests: https://www.polarproducts.com/polarshop/pc/home.asp
ORANGE COUNTY MG WALK
MGFA is looking for someone to co-lead and assist with the Orange County MG walk.We have another volunteer who is willing to co-lead but she lives in San Diego so for logistics we also need someone closer. If interested in getting more information please contact Kathi Timothy, MGFA Community Outreach Coordinator @ ktimothy@myasthenia.org
NUTRITION FOR MGers
https://sites.google.com/view/socalmggroup/resources/nutrition-health-living-with-mg
WHAT STRATEGIES DO YOU USE FOR TRAVEL?
Prepare by lining up a MG doctor at destination or on ship
Have MG wallet card on hand
List of medications
Bring cooling or heating pad
Ultomiris & Vyvgart- quite a few of our members are having great success on one of these therapies. Ultomiris is manufactured by Alexion and Vyvgart is manufactured by Argenyx. Both have great patient resource websites
Ultomiris
Alexion's One Source Site for Patients:https://alexiononesource.com/ultomiris
Vyvgart
https://vyvgarthcp.com/gmg/resources/patient-support-program#tabs-3d7b80c486-item-751b8bfe00-tab
M
G United Site created by Argenx: https://www.mg-united.com/
Picnic Health recently purchased AllStripes. Picnic Health is a portal that helps patients gather all of their medical records in one convenient place. You can check them out here: https://picnichealth.com/
MG Clinical Trials
https://myasthenia.org/MG-Research/Clinical-Trials
OF INTEREST:
Cellcept and Prednisone- can affect blood sugar levels
MGFA YouTube for past webinars: https://www.youtube.com/channel/UCeOJeKWofRZeocwzEpoNXJw
MG ADL Score: see attached
MG Symptom Tracking apps
Improve MG: created by Dr. Muppidi at Stanford
MGFA My MG: https://myasthenia.org/Newly-Diagnosed/MyMG-Mobile-App
GIVING THANKS TO ALL…
To the warriors with strength so true,
MG patients, this day’s for you.
With courage steadfast, you face each test,
In every challenge, you give your best.
To caregivers whose love lights the way,
Your tireless efforts we honor today.
Through every struggle, you’re always near,
A beacon of hope, a source of cheer.
This Thanksgiving, we pause to reflect,
On lives enriched by love and respect.
Though trials may linger, together we stand,
With gratitude flowing, hand in hand.
For every moment of grace we find,
For hearts resilient and spirits kind,
Let’s celebrate all that keeps us strong—
A community where we belong.
JULY
MYASTHENIA GRAVIS
SO CAL SUPPORT GROUP
HELPFUL ARTICLES & LINKS
July 2024
NUTRITION FOR MGers
https://sites.google.com/view/socalmggroup/resources/nutrition-health-living-with-mg
WHAT STRATEGIES DO YOU USE FOR TRAVEL?
Prepare by lining up a MG doctor at destination or on ship
Have MG wallet card on hand
List of medications
Bring cooling or hating pad
Move for MG - This is a new series of Youtube videos by Liz Plowman (sponsored by Alexion), a physical therapist (PT) based in Houston, Texas, who specializes in chronic pain conditions. She also is a person living with myasthenia gravis (MG). Episode 1 introduces Liz and how she became a PT. In Episode 2 Liz goes into detail about the similarities and differences between occupational and physical therapy. Additionally, she gives examples for which therapy is best as a solution to specific problems people with MG may face. You can find additional episodes, as they are added, on the More Than MG Youtube channel.
HEADACHES vs.MIGRAINES
I get frequent headaches and curious if others do as well and likely remedies….some are caused by the medication or IVIG drip which patient is given Benadryl during treatment along with a very slow drip to reduce possible side effects .
A migraine is a headache that can cause severe throbbing pain or a pulsing sensation, usually on one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound
MGFA Helpline - 1 833 647 8764
MGFA is excited to announce the launch of the new MGFA Helpline. The helpline is staffed by experienced counselors who are available to answer your questions about living with myasthenia gravis, provide emotional support, and guide you to resources.
Call 1-833-647-8764 (1-833-MGSTRNG) Monday through Friday between 9 a.m. and 8 p.m. Eastern Time to be connected to a counselor.
Our helpline staff are certified counselors, and while they can’t provide medical advice (only a treating provider should do that), they can direct you to the information and resources you need. This might include connecting you to the right support group, helping you find a neuromuscular specialist in your area, or recommending support resources for your specific needs.
Clinical Trials
- Information: https://myasthenia.org/MG-Research/Clinical-Trials
- Webinars:
https://www.youtube.com/@myastheniagravisfoundation8053/search?query=clinical%20trials
Cushing's Syndrome from Steroids
https://www.niddk.nih.gov/health-information/endocrine-diseases/cushings-syndrome
Heat with MG
- General Info: https://myasthenia.org/About-MGFA/MGFA-Publications/MGFA-MG-Community-Insider-Blog/beating-the-heat-during-summer-months
- Cooling Vests: https://www.polarproducts.com/polarshop/pc/home.asp
Medical Binder (from May meeting)
In our May meeting, Shirl shared about the binder that she keeps all of her medical information in. She has kindly shared them with us and I've attached them to this email. Also sorry for not sending sooner!
Outline of binder
Binder cover for clear sleeve on front of binder and on fridge (keep binder on fridge per EMTs)
List for doctor appointments
MG SF Group Website Page
Mike has generously offered to add a page to the MG SoCal Group website! If there's any information or content specific to our group that you'd like to see, let me know!
Community Health Fairs
MGFA Community Health Fairs are designed to help you and your loved ones navigate MG. 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.
Locations and Dates:
- Houston (Regional Conference in morning): October 7
- Greater DMV: October 14
- Tampa Bay (Mini Mile in morning): November 4
More Information: https://myasthenia.org/Events/Community-Health-Fairs
MGFA Wellness Series: MG Physical Therapy
Shared by support group member - I may have sent this link already but here it is again. There is good stuff in here in my opinion especially the screen shot that I attach. Please share
https://www.youtube.com/watch?v=Ej0EVw1BzVE
MG WALLET CARD
Download and complete the Emergency Alert Card in the event of an MG Crisis
https://myasthenia.org/Living-With-MG/MG-Emergency-Preparedness/Emergency-Medical-Card
Download the document:
JUNE
MYASTHENIA GRAVIS
SO CAL SUPPORT GROUP
mgsocalgroup.com
HELPFUL ARTICLES & LINKS
June 2024
MGFA PATIENT HELPLINE
The MGFA Patient Helpline is live. This is an amazing resource for our community. The line is staffed by licensed counselors. 1-833-647-8764
PATIENT REGISTRY
Submit Your MG Patient Data to Help Researchers Find Better Treatments for Myasthenia Gravis. Once you have enrolled and filled out the survey, you can contribute your up to date health data twice a year. If you are Already Enrolled in the MGFA Global MG Patient Registry
You have the option of entering your patient health data in the MG Registry survey using your computer or a mobil.e device.
If you Want to Enroll in the MGFA Global MG Patient Registry for the First Time
Option 1 – Using a Computer
Option 2 – Using a Mobile App
Here is the direct link to the registry.
LINKS SHARED BY MEMBERS:
SongShine began when Eisenhower Medical Center in Rancho Mirage, CA Dr. Metzgar felt called to serve, requesting open classes for all with neurological disorders https://songshineforparkinsons.com/foundation/
Exercise
YouTube: https://www.youtube.com/watch?v=oRXUDL0SFzQ
HASfit
https://hasfit.com › workouts › home › senior
20-30 minute exercises for seniors
ANTI-FATIQUE MATS - RUGS:
Are effective in reducing stress and pressure on feet, knees and lower back …found on Amazon, Home Depot, Costco; one member mentioned as word of caution….be careful not to trip
PREDNISONE (ORAL ROUTE) SIDE EFFECTS
Great talk with the group about prednisone and the precautions and side effects; here’s a link from Mayo Clinic include details https://www.mayoclinic.org/drugs-supplements/ prednisone-oral-route/side-effects/drg-20075269?p=1
CABALETTA BIO discovers and develops targeted cell therapy product candidates to potentially cure patients with autoimmune diseases. https://www.cabalettabio.com
CLINICALTRIALS.GOV is a place to learn about clinical studies from around the world
STORY OF AN MG PATIENT’S JOURNEY WITH MG
This is It an episode of a show called The Balancing Act from the Lifetime channel. It is the story of an MG patient's journey with MG and includes interviews of two renowned Neuromuscular MDs from UCI and UCSF. https://www.youtube.com/watch?v=a64XFLFR7SA
Legal Resources in Southern California for MG Patients
Myasthenia Gravis Foundation of America
Any questions/research about MG should start here at our patient-friendly website full of valuable resources and connections. https://myasthenia.org/ For new patients, please check out MG Friends https://myasthenia.org/MG-Community/MG-Friends where volunteers will connect you with a fellow MG warrior. MG strong!!
Disability Rights California
This non-profit organization is designated under Federal law to protect and advocate for the rights of Californians with disabilities of all kinds. Their website list resources to inform individuals of their legal rights at https://www.disabilityrightsca.org/publications. This organization also supports numerous programs to refer and assist patients who have issues with abuse and neglect, legal representation and rights protection, outreach and education. Details and contact information are available at https://www.disabilityrightsca.org/what-we-do/programs
Legal Aid at Work – Disability Rights
Legal Aid at Work’s website provides online information about individuals’ rights in the workplace and in educational settings. They also provide direct services at clinics in multiple locations in California, including San Bernardino and Los Angeles. General information: https://legalaidatwork.org/ or in the Los Angeles area call (323) 752-7287. Information regarding the disability rights program is at https://legalaidatwork.org/our-programs/disability-access-rights/
State and Regional Government Resources
The California Office of the Attorney General has a great summary of government and private non profit resources for disabilities: https://oag.ca.gov/civil/resources-ada-people This is a good starting point to see what resources are available to you in a particular area.
Neighborhood Legal Services of Los Angeles County
Neighborhood Legal Services of Los Angeles County provides free legal services to Los Angeles residents, including issues with housing, workers rights, and obtaining public benefits. Information is on their website at https://nlsla.org/
California Civil Rights Department
This state agency (previously called the Department of Fair Employment and Housing) promotes equality and addresses discrimination against protected groups, including people with disabilities. Their website lists helpful references to state laws and regulations. https://www.dfeh.ca.gov/legalrecords/ You may also contact a field office or file a complaint if you believe you have been discriminated against. Call 800-884-1684 or contact.center@dfeh.ca.gov
For more information on California legal resources email LauraZieglerDavis@gmail.com This information is provided for the sole purpose of patient outreach and is not intended to constitute legal advice of any kind.
MYASTHENIA GRAVIS SPECIAL ISSUE SUMMER 2024
You’ll want to see this issue of Brain and Life Magazine; it’s a Myasthenia Gravis special issue. https://www.brainandlife.org/the-magazine/myasthenia-gravis-special-issue-summer-2024
Hope for Myasthenia Gravis (from WebMD Perspectives)
View as a Webpage
There is no known cure for myasthenia gravis, but doctors have more effective treatments than ever before. Since 2017, five new medications have gained FDA approval for generalized myasthenia gravis, and research into new therapies is ongoing. It can take time for you and your doctor to find the best options for you. With the right treatment, there's a good chance you'll be able to resume your life pretty much as before. Read on for more information about treatment innovations, what it's like to have MG as a young adult, and more.
Upcoming MG SoCal Support Group Meetings:
Contact: mgsocalgroup@gmail.com
Website: calmggroup.com or https://sites.google.com/view/socalmggroup/home
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
April & May
April & May
MYASTHENIA GRAVIS
SO CAL SUPPORT GROUP
mgsocalgroup.com
HELPFUL ARTICLES & LINKS
April & May 2024
DIGITAL MONITORING
Dr Muppidi’s presentation - Improve MG symptom tracking app
https://us06web.zoom.us/rec/share/iY5BCPcZo90qBaEqomSHOVb5qFPWGxI-
srzCpwkTyuPYgJQUUXGkU8zSpFnh-og.sCdvCfPhskIV_67d
Passcode: m#8=vW9x
DIGITAL MONITORING
Below is the HumaMG app support your MG journey, monitor and manage your MG
symptoms. This is from the MGFA conference.
Here’s the link to download: https://huma.onelink.me/zjeO/c4v3167e
For more information, you can also visit: https://info.huma.com/huma-mg
OPEN STUDY
ME&MG open study for patients diagnosed with general Myasthenia Gravis. The current study
does not require physical participation, rather one zoom call with a trial coordinator and all
other study activities are completed at home.
Criteria:
• Diagnosed with general Myasthenia Gravis (gMG)
• Age 18+ yrs of age
• Able to use a smartphone
• Willing to use the ME&MGopen mobile application for 12 months to perform digital tests
and complete questionnaires once per month
• Note: You may earn up to $500 for participation in the study based on assessment
completion
Use the link below to connect to the study webpage. By clicking "sign up", individuals may fill
out information to determine if they are eligible to participate in the study.
Please send any questions, comments, or concerns to Samantha Brooks, Trial Manager
M: 5204689054 | E: samantha@lindushealth.com
Myasthenia Gravis: Making Progress for More Accurate Diagnoses and Targeted
Treatments
https://practicalneurology.com/articles/2024-apr/myasthenia-gravis-making-progress-for-more-
accurate-diagnoses-and-targeted-treatments
On the announcement section, of the homepage is a great article that one of our members,
Frank Morrow, sent to us. It’s a very good and recent article from Practical Neurology:
https://practicalneurology.com/articles/2024-apr/myasthenia-gravis-making-progress-for-more-
accurate-diagnoses-and-targeted-treatments
VIDEO: MG PATIENT’S JOURNEY with MG
...came across this fantastic video which came out. It is an episode of a show called
The Balancing Act from the Lifetime channel. It is the story of an MG patient's journey
with MG and includes interviews of two renowned Neuromuscular MDs from UCI and
UCSF. It's by far the best video about MG I've ever seen. I highly recommend that you
send it out to our group and also to as many other group leaders that you know.
https://www.youtube.com/watch?v=a64XFLFR7SA
SoCal MG Website Updates
Mike Stabile, our webmaster, has been extremely busy keeping our website up-to-date
with tons of information. CHECK IT OUT!!!
There are YouTube videos, updates about MG symptoms, upcoming meetings ...
To view the videos, go to our website https://sites.google.com/view/socalmggroup/home > then go to Resources
and then click > What is myasthenia gravis?
You’ll be pleasantly surprised with tons of updated information and data.
Upcoming MG So Cal Support Group Meetings:
Contact: mgsocalgroup@gmail.com
Website: https://sites.google.com/view/socalmggroup/home
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
March
March
MYASTHENIA GRAVIS
SO CAL SUPPORT GROUP
mgsocalgroup.com
HELPFUL ARTICLES & LINKS
FROM SUPPORT GROUP MEMBERS
March 2024
Below are some important links Support is all around you ...
MG Phase 2 Study: FDA clears Phase 2b generalized myasthenia gravis study of NMD670
(myastheniagravisnews.com)
Need help paying for Medical Care? Resources Found Here: Myasthenia Gravis External
Assistance Programs | MGFA
The MG SoCal Group Updated Website with Resources: You'll find YouTube videos, updates
about MG symptoms, upcoming meetings ...
To view the videos, go to https://sites.google.com/view/socalmggroup/home > Resources > What is myasthenia gravis?
Wellness Webinars – https://myasthenia.org/Webinars/Wellness-Series
The National MG Meeting is a few weeks away, register here to attend in person or virtually:
National Patient Conference (note: a link to this is no longer available)
Newly Diagnosed with Myasthenia Gravis? Click Here
https://myasthenia.org/Newly-Diagnosed
Upcoming MG SoCal Group Virtual Meeting
Request copy of meeting notice: mgsocalgroup@gmail.com
2nd Quarter Support Group Meeting -
Saturday, June 8, 2024 - 9:00-11:00 AM (Pacific)
ZOOM LINK:
https://us06web.zoom.us/j/87140038382pwd=uEI2LRHrasLoeq0fd8IiAwLFiDUDRt.1
Meeting ID: 871 4003 8382
Passcode: 069638
IT'S COMING!!
2024 MGFA Orange County / Los Angeles Area
Community Health Fair
WHEN:
Saturday, June 08, 2024
10:00 AM - 2:00 PM
WHERE:
Irvine Marriott
18000 Von Karman Ave.
Irvine , CA 92612
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.
CLICK HERE TO REGISTER (It's free!)
February 2024
February 2024
MYASTHENIA GRAVIS SO CAL SUPPORT GROUP
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:
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: calmggroup.com or https://sites.google.com/view/socalmggroup/home
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:
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:
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)
December 2023/January 2024
December 2023/January 2024
MYASTHENIA GRAVIS SO CAL SUPPORT GROUP
mgsocalgroup.com
MG SoCal Group Website - calmggroup.com
Check out the website that Mike Stabile manages for the SoCal support group! There's a lot of great resources and information on the site.
2024 SoCal MG Support Group Virtual Meeting Dates:
Saturday, March 9, 2024 from 9:00 AM to 11:00 AM PST/PDT
Saturday, June 8, 2024 from 9:00 AM to 11:00 AM PST/PDT
Saturday, September 14, 2024 from 9:00 AM to 11:00 AM PST/PDT
Saturday, December 14, 2024 from 9:00 AM to 11:00 AM PST/PDT
Zoom links will be sent a month before our meetings. The meeting information is also posted to our website at calmggroup.com and posted to Facebook MG Support Group page. Contact: mgsocalgroup@gmail.com
MGFA on social media
Be sure you're also following MGFA on social media to be up on the latest news:
Facebook: @MyastheniaGravisFoundation
Instagram: @MyastheniaOrg
Twitter: @MyastheniaOrg
LinkedIn: @myastheniagravisfoundationofamericainc
YouTube: @myastheniagravisfoundation8053
MG ADL and Tracking Your Symptoms
- MG ADL: a great way to put a number to your degree of weakness; often used by neurologists. Download form: https://myasthenia.org/Portals/0/ADL.pdf. Information page.
- MyMG app: track your symptoms and access resources https://myasthenia.org/Newly-Diagnosed/MyMG-Mobile-App
- Improve MG App: created by Dr. Muppidi at Stanford; an easy app to track your symptoms including video and audio functions. Available at Google Play and App Store.
Bay Area Regional Conference and Community Health Fair
Hear from two guest speakers at the regional conference in the morning. Talk with medical professionals, access educational and wellness resources, and meet others in the MG community at the community health fair.
Date: Saturday, March 2, 10:00 AM to 2:00 PM
Location: San Mateo Marriott San Francisco Airport, 1770 S. Amphlett Blvd, San Mateo, CA 94402
Conference Speaker (1/2): Dr. Muppidi of Stanford
More Information and Registration: https://myasthenia.org/Events/Community-Health-Fairs
MGFA 2024 National Patient Conference
The annual MGFA National Patient Conference is the largest and most complete
gathering of the MG Community. Every year, attendees include amazing and resilient
MG patients, generous caregivers, and MG experts including researchers, clinicians,
and medical professionals. 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
Location: Westin Tampa Waterside, Tampa, FL
More Information and Registration: https://myasthenia.org/Events/2024-national-
Seronegative Support Group
When: Saturday, Feb 3 from 2:00 to 3:30 PM ET
Meeting Link: https://us06web.zoom.us/j/7686539760?omn=82466206130
Contact: snmggroup@gmail.com
Facebook: https://www.facebook.com/groups/899235894572163
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.
2023
2023
November
November
MYASTHENIA GRAVIS SO CAL SUPPORT GROUP
mgsocalgroup.com
MONTHLY SUMMARY OF EMAILS
HELPFUL ARTICLES & LINKS FROM SUPPORT GROUP MEMBERS
Southern CA MG Support Group Website - mgsocalgroup.com
2024 SoCal MG Support Group Virtual Meeting Dates:
Saturday, March 9, 2024 from 9:00 AM to 11:00 AM PST/PDT
Saturday, June 8, 2024 from 9:00 AM to 11:00 AM PST/PDT
Saturday, September 14, 2024 from 9:00 AM to 11:00 AM PST/PDT
Saturday, December 14, 2024 from 9:00 AM to 11:00 AM PST/PDT
Zoom links will be sent a month before our meetings.
Meeting information will also be posted to our website at calmggroup.com and posted to Facebook MG Support Group page.
Contact: Connie DiPasqua, mgsocalgroup@gmail.com
MGFA on Social Media
Be sure you're also following MGFA on social media to be up on the latest news:
Facebook: @MyastheniaGravisFoundation
Instagram: @MyastheniaOrg
Twitter: @MyastheniaOrg
LinkedIn: @myastheniagravisfoundationofamericainc
YouTube: @myastheniagravisfoundation8053
MuSK Myasthenia study
Opportunity for people with MuSK myasthenia gravis to be part of a research study that could change our understanding of this form of the disease! This MuSK Myasthenia 1000 study seeks to collect a one time saliva sample from MuSK myasthenia gravis patients to help researchers identify genetic risk factors that cause this disease with hope to develop better treatments for patients. This study is funded by the National Institutes of Health's, Rare Disease Clinical Research Network for Myasthenia Gravis. This study is run at the George Washington University under the supervision of Henry Kaminski, MD, lead investigator of this project.
Email: musk1000@mfa.gwu.edu OR call: 202-677-6205 for more information and to participate.
Povetacicept found superior to current MG treatments: Early study
https://myastheniagravisnews.com/news/povetacicept-found-superior- current-treatments-early-study/
Medications to Avoid: https://myasthenia.org/Newly-Diagnosed/Cautionary-Drugs-for-MG-Patients
https://sites.google.com/view/socalmggroup/resources/neuromuscular-neurologists-and-other-mds-recommended-by-group-membersOctober
https://sites.google.com/view/socalmggroup/resources/neuromuscular-neurologists-and-other-mds-recommended-by-group-membersOctober
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 @ calmggroup.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 (removed)
Prednisone Information - (removed)
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.
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: (removed)
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: (removed)
NEW Seronegative Support Group - When: Saturday, November 18 from 2:00 to 3:30 PM ET
Meeting Link: (removed) - 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: (removed)
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: (removed)
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
MEDICATIONS - List of drug interactions and meds not to take are on our website under Resources;.
link is: https://sites.google.com/view/socalmggroup/resources/drugs-cautionsinteractions-checker
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/socalmggroup/resources/neuromuscular-neurologists-and-other-mds-recommended-by-group-members
MG SO CAL SUPPORT GROUP WEBSITE - Check out our website: calmggroup.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/
September
September
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
TO FIND AN 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 EMERGING TREATMENTS VIDEO
Excellent YouTube Video on MG Emerging treatments. https://youtu.be/ip0MxGi4x3U
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/Portals/0/Emergency%20Management%20for%20First%20Responders.pdf
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.
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
MEDICATIONS: List of drug interactions and meds not to take are on our website under "Resources"; link is: https://sites.google.com/view/socalmggroup/resources/drugs-cautionsinteractions-checker
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 is needed - YOU ARE RECOVERING!!!
DOUBLE VISION: Mestinon, prism glasses, sleep/rest, take your medicine, clean eating
TIPS FOR OCULAR MG: Blue beaded freezer eye mask, cold mask helps relieve eye twitching and
tired eyelids. Wearing eye patch for an hour then switch to other eye. Do not wear more than 1 hour to avoid hurting eye. Prism glasses, opaque tape over one eyeglass lens, or business card placed under one eyeglass lens.
ADL APPLICATION & MG DOCTOR VISITS: When meeting with current MD or new MD, bring copy of ADL form (Activity of Daily Living) with you to give to the doctor. Complete the form over the month not just the day before your visit. Also ask the doctor how many MG patients they are treating; It’s good for you or your advocate to know how many MG patients the doctor treats.
IVs: Rystiggo recently approved by FDA July 2023. Vyvgard is administered through IV or injection.
MG DOCTORS AND PROFESSIONALS RECOMMENDED BY OUR GROUP MEMBERS:
MG SO CAL SUPPORT GROUP WEBSITE
Check out our new group website: calmggroup.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, etc.
Send your questions, comments, suggestions and articles to our group mailbox, mgsocalgroup@gmail.com
MGFA: The MGFA site https://myasthenia.org/ is packed with info, if you are interested in a certain topic or need help let me know, I'm happy to point you in the right direction. They also have a YouTube Channel with a lot of great webinars you may be interested in: https://www.youtube.com/results?search_query=mgfa
Caregiver Support Groups-MGFA Options: Myasthenia Gravis Foundation of America > MG Community
> Find MG Support Groups
A MG member Jim Monroe shared this group that they’ve gone to in the past: Home - Heart of Caregiving to empower and educate caregivers.
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 > 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
Dentistry and MG: Here's Dr. Gene Casagrande's presentation that was mentioned on a support group call:
MGFA Wellness Series: Dentistry and MG - YouTube
Financial Assistance:
• NRD-1061 Cystinosis_ERF_FAQ Program_3 (rarediseases.org)
• The Assistance Fund (tafcares.org) Accepting New Patients TAF is currently accepting new patient enrollments for this program.
• Medicine Assistance Tool
• Myasthenia Gravis External Assistance Programs | MGFA
The Fatigue Tracker also comes in handy, hope this helps some of you and your members. I’s located on MGFA site Track Fatigue Note Activities Chart > https://myasthenia.org/Portals/0/Track%20Fatigue%20Chart.pdf
August
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:
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 (7 pages 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:
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)
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