UPDATES
UPDATES
Embedded Files
2025
2025
May-June
Hi everyone,
I hope you're doing well! I'm sorry I missed sending the May recap; here's May and June together. Our next meeting is Sunday, July 20 at 10:00 AM. Register at:
https://us06web.zoom.us/meeting/register/VPXMvlglQuyF_9msEvBTGA. After registering, you will receive a confirmation email containing information about joining the meeting. Thank you and don't hesitate to reach out if you need anything.
CA MG Website
Check it out at CalMGGroup.com, it's an amazing resource and has updates for all the support groups in CA!
NEW Sacramento/Sierras Support Group
The Sacramento Support Group has started back up again under the leadership of Jill Williams, and is expanding to cover the Sierras! You can join her email list by messaging her at mgsacsierra@gmail.com.
Meeting Notes/Topics Discussed
https://sites.google.com/view/socalmggroup/resources/common-drug-therapies
- Cellcept, Imuran
- Prednisone: osteopenia/osteoporosis, Cushings, parathyroid side effects
- Zilucoplan
- Rituximab
- IG National Society, IG Conference: https://ig-ns.org/conferences/
- IG Living: https://www.igliving.com/
- CAR-T: https://sites.google.com/view/socalmggroup/resources/current-or-recent-mg-research-studies
- Light sensitivity, ophthalmologist or neuro-ophthalmologist
- Transportation to appointments: a few nonprofits like National Organization for Rare Disorders, PAN Foundation, and the Assistance Fund can help with travel expenses
- UCSF Proctor Foundation (opthamology): https://proctor.ucsf.edu/
- Glaucoma with prednisone use
- Getting dexascan (bone density scans) at image centers
- Dental considerations with MG: https://www.youtube.com/watch?v=C3w-vrg0lAI
Southern CA Support Group
Date and Time: Saturday, July 12 from 9:00 AM to 11:00 AM PT
Meeting Link: https://us06web.zoom.us/j/83789220613?pwd=RkUXIVbRa9Y3NJGZP6lO16DEDbxmPL.1#success
Meeting ID: 827 8084 0705 Passcode: 497489
Contact: Connie DiPasqua, mgsocalgroup@gmail.com
International Spanish MG Support Group
Date and Time: Sunday, July 13 from 1:00 to 2:30 PM CT
Topic: Open group discussion
Contact for Registration Link: Leah, lamgchampions@gmail.com
Sacramento-Sierra CA Support Group
Date and Time: Tuesday, July 15 at 6:00 PM
Meeting Link: https://us06web.zoom.us/meeting/register/7kxp-XU5SEa361lNg__wmQ#/registration
Meeting ID: 817 2293 8374 Passcode: 884589
Contact: Jill Williams, mgsacsierra@gmail.com
Pacific Northwest Support Group
Date and Time: Thursday, July 17 at 6:00 PM PT
Contact for Registration Link: pnwmgsf@gmail.com, cara.brown1@gmail.com
San Diego Support Group
Date and Time: Tuesday, July 22 at 6:00 PM PT
Register at: https://us06web.zoom.us/j/4609723336?omn=84308403590#success
Contact: Andrea Divis, mgsandiegogroup@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! 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
MG Considerations in Dentistry (YouTube)
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
Community Health Fair Lead Volunteer
Email: mgwarriorssf@gmail.com
April
Hi everyone, I hope you're doing well! Thank you for attending our last meeting! I have rescheduled our May meeting to Monday, May 19 at 5:00 PM. See registration link below.
Below are the meeting notes and upcoming meetings/events. You can also find the links to watch the recordings of the annual National Patient Conference that took place in Arizona at the end of March.
I am organizing the Orange County/Los Angeles Community Health Fair on May 31! Registration information below.
As always, please feel free to reach out if you have any questions or need anything!
CA MG Website
Check it out at CalMGGroup.com, it's an amazing resource! A huge THANK YOU to Mike for putting it together!!
Meeting Notes/Topics Discussed
- 🔥🔥 NEW GROUP: Sacramento/Sierras Support Group: The Sacramento Support Group is starting back up again under the leadership of Jill Williams! You can join her email list by messaging her at mgsacsierra@gmail.com. More information to come!
- Fatigue: webinar on fatigue (https://www.youtube.com/watch?v=cpQbG7bEOMU)
- Thymoma, Thymectomy:
MGFA Webinar Series: Thymectomy or Not?: https://www.youtube.com/watch?v=2xOnRGgEayM
2018 National Conference: https://www.youtube.com/watch?v=pTOrGnjli1I
MGFA Thymectomy Resource Center: https://myasthenia.org/treatments/thymectomy-resource-center/
- MG Cautionary Drugs: https://myasthenia.org/living-with-mg/mg-emergency-preparedness/cautionary-drugs/
- Anesthesiology with MG: https://www.youtube.com/watch?v=CbmDwZwIDqY
- Liz Plowman, Physical Therapist and MGer: https://www.youtube.com/results?search_query=liz+plowman
- Paul Eugene Fitness: senior exercises recommended (https://www.youtube.com/@PaulEugene)
- Exercising with MG:
Exercising and Staying Active at Home: https://www.youtube.com/watch?v=g5j0VJXVFao
Exercise and MG by Dr. Wright (see also National Patient Conference Tuesday Morning Session): https://www.youtube.com/watch?v=Ej0EVw1BzVE
MGFA National Patient Conference Recordings
Monday Morning Sessions: https://youtu.be/lXrbtlLusFs
Welcome Address, Samantha Masterson, MGFA President and CEO
Keynote Address: Understanding the Disease Processes Driving the Subtypes of Myasthenia Gravis and Related Neuromuscular Junction Disorders, Kevin O’Connor, PhD, Yale School of Medicine
Myasthenia Gravis Disease State and Treatment Options, Suraj Muley, MD, Director of Neurology, Bob Bove Neuroscience Institute & Professor of Neurology, University of Arizona School of Medicine
Treatment Expectations in Myasthenia Gravis: The Changing Conversation, Jeffrey Rosenfeld, PhD, MD, Loma Linda University
Monday Afternoon Sessions: https://youtu.be/5CeZC7Pasus
Empowered Voices: Navigating Legislative Advocacy and Self Advocacy for Lasting Change, Melinda J. Burnworth, PharmD, NORD
Panel Discussion: The Path for You – Shared Decision Making, with MG patients Janel Worcester-Brown and Randy Clough Moderated. Moderated by Kelly Graham Gwathmey, MD, Associate Professor of Neurology, Virginia Commonwealth University
Tuesday Morning Sessions: https://youtu.be/WC9rBONApKE
Unexpected Gifts: Transform Your Challenges and Rewrite Your Story, Vickie Petz Kasper, MD, Author, Podcast Host, and Diplomate of the American Board of Lifestyle Medicine and Obstetrics and Gynecology
#AskPatients: How Patient Engagement Shapes the Future of Care, Jen Horonjeff, PhD, CEO & Founder, Savvy Cooperative
Strength in Motion: Safe and Effective Exercise for Myasthenia Gravis, Sarah Wright, DO, MS, Pediatric Neurologist, Children’s National HospitalDavid Jack Closing "Together We Rise!": https://youtu.be/2NJCfhGF8Yw
Pacific Northwest Support Group
Date and Time: Thursday, May 8 at 6:30 PM PT
Contact for Registration Link: pnwmgsf@gmail.com, cara.brown1@gmail.com
Southern CA Support Group
Date and Time: Saturday, May 10 from 9:00 AM to 11:00 AM PT
Topic: Share and care
Contact: Connie DiPasqua, mgsocalgroup@gmail.com
International Spanish MG Support Group
Date and Time: Saturday, May 10 from 1:00 to 2:30 PM CT
Topic: Open group discussion
Contact for Registration Link: Leah, lamgchampions@gmail.com
Seronegative Support Group
Date and Time: Saturday, May 10 from 2:00 to 3:30 PM ET
Topic: Open group discussion
Contact for Registration Link: snmggroup@gmail.com
San Francisco Bay Area Support Group
Date and Time: Monday, May 19 at 5:00 PM PT
Topic: Open group discussion
Contact: Jessica Milanes, mgwarriorssf@gmail.com
Join our private Facebook group at: https://www.facebook.com/groups/mgsfsupportgroup
San Diego Support Group
Date and Time: Tuesday, May 27 at 6:00 PM PT
Topic: MG Awareness/Life Hacks
Contact: Andrea Divis, mgsandiegogroup@gmail.com
Orange County/Los Angeles Community Health Fair
Date: Saturday, May 31
Time: 9:00 AM to 1:00 PM (Guest speakers at 10:00 AM and 11:00 AM)
Address: Irvine Marriott, 18000 Von Karman Ave. Irvine, CA 92612
Register for Free (please register each person attending): https://myastheniagravis.givevirtuous.org/Event/2025-ocla-community-health-fair
The MGFA Community Health Fairs are an opportunity for MG patients and their loved ones to connect with each other and local/MG resources. We will have Dr. Ali Habib and Dr. Jeffrey Rosenfeld presenting. Registration and parking are free, and we will have coffee and light breakfast. The SoCal Support Group will be having a breakfast meetup at the event!
I am looking for local businesses/resources to host tables and talk to everyone. If you know of someone who might be interested, please let me know! Please feel free to share the event with anyone that would be interested!
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
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
Community Health Fair Lead Volunteer
Email: mgwarriorssf@gmail.com
March
Hi everyone,
I hope you're doing well and sorry for the late meeting recap email! Shortly after our last meeting I had the chance to attend the MGFA National Patient Conference in Arizona. It was wonderful connecting with new and familiar faces, as well as learn new things about MG! All presentations were recorded and you can find the links to watch the recordings below. I'm also organizing the Orange County/Los Angeles Community Health Fair on May 31! More information below.
As always, please feel free to reach out if you have any questions or need anything!
CA MG Website
The website was temporarily down but a huge THANK YOU to Mike for getting it back up and running! Check it out at CalMGGroup.com, it's an amazing resource! Also check out Mike's most recently published article "Am I Glad I Got MG? Maybe...": https://myasthenia-gravis.com/living/diagnosis-positives
Meeting Notes/Topics Discussed
- Prednisone side effects: https://myasthenia.org/myasthenia-gravis-treatments/#Corticosteroids
- CO2 retention exercises, diaphragm breathing
- Breathing exercises for speaking
- Liz Plowman, PT: video on energy pacing (https://www.youtube.com/watch?v=NjES3ZvFy6U)
- Fatigue
- Neck weakness
- Ventilators/non invasive ventilators
- Barium swallow test
- Glycopyrrolate
- Mestinon/pyridostigmine containing lactose vs syrup version not containing lactose
- Integrative medicine, schools that teach or do therapy sessions for free
- Cough assist
- Abilities Expo: https://www.abilities.com/
- United Health Care/Medicare ending telehealth visits: looks like it's been extended to 9/30/25
- Ice for back pain, infrared heat lamps/red lights
- Pain clinics
- Cupping, acupuncture
MGFA National Patient Conference Recordings
Monday Morning Sessions
Monday Afternoon Sessions
Tuesday Morning Sessions
David Jack closing
Southern Oregon Support Group
Date and Time: Thursday, April 10 at 6:30 PM PT
Meeting Link: https://us06web.zoom.us/j/84259963785?pwd=tTjc51KBfsP5kfeOHYv4JcILOmonXh.1
Meeting ID: 842 5996 3785 Passcode: 295481
Southern CA Support Group
Date and Time: Saturday, April 12 from 9:00 AM to 11:00 AM PT
Speaker: Dr. Ryback, Cartesian Therapeutics (hosted by Cindy Streltzov)
Meeting Link: https://us06web.zoom.us/j/84914545684?pwd=0p6mhVavzq2wbO98cxVI6pLabMyopU.1
Meeting ID: 849 1454 5684 Passcode: 590636
Contact: Connie DiPasqua, mgsocalgroup@gmail.com
San Francisco Support Group
Date and Time: Monday, April 21 at 5:00 PM PT
Topic: Open group discussion
Register at: https://us06web.zoom.us/meeting/register/X_WagzxaQxixax8i9nt43w.
Join our private Facebook group at: https://www.facebook.com/groups/mgsfsupportgroup
San Diego Support Group
Date and Time: Tuesday, April 22 at 6:00 to 7:30 PM
Topic: Cartesian CAR-T Cell Therapy
Register at: https://us06web.zoom.us/meeting/register/tZIvcOmgpzgjH9Mb9_BAyLPyzW-MgT42InYE#/registration
Contact: Andrea Divis, mgsandiegogroup@gmail.com
Orange County/Los Angeles Community Health Fair
Date: Saturday, May 31
Time: 9:00 AM to 1:00 PM (Guest speakers at 10:00 AM and 11:00 AM)
Address: Irvine Marriott, 18000 Von Karman Ave. Irvine, CA 92612
Register for Free (please register each person attending): https://myastheniagravis.givevirtuous.org/Event/2025-ocla-community-health-fair
Hotel Discount Booking: please contact me and I’ll send you the link!
The MGFA Community Health Fairs are an opportunity for MG patients and their loved ones to connect with each other and local/MG resources. We will have Dr. Ali Habib and another guest speaker presenting. Registration and parking are free, and we will have coffee and light bites. The SoCal Support Group will be having a breakfast meetup at the event!
I am looking for local businesses/resources to host tables and talk to everyone. If you know of someone who might be interested, please let me know! I am also looking for volunteers to help at the event, particularly manning our support group table. Let me know if you’d like to help! Please feel free to share the event with anyone that would be interested!
Myasthenia Advocacy for Young Adults (MAYA)
MAYA focuses on topics geared towards those ages 18 to 40 but is open to anyone.
Weekend Meeting Date and Time: Sunday, April 27 at 10:00 AM to 11:30 AM PT
Register: https://us06web.zoom.us/meeting/register/tZcsdumgrDMqEtbAf4Yu8DTw_qrqQOwkd7T2
Weekday Meeting Date and Time: Tuesday, April 29 at 6:00 PM MT
Register: https://us06web.zoom.us/meeting/register/tZwufu2vqzgtHN1JUVD_pC_awMVD2pAdLau6
Contact: Jessica Milanes, Hannah Ensor, mgfamaya@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! 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
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
MAYA Lead Volunteer
Community Health Fair Lead Volunteer
Email: mgwarriorssf@gmail.com, mgfamaya@gmail.com
MGFA National Patient Conference YouTube Videos:
February
Hi everyone,
I hope you are doing well! It was so nice to see new and familiar faces at our Community Health Fair this past month! We had about 60 people attend and had the chance to hear from Dr. Muppidi of Stanford and Dr. Clifford of Sutter Health. Thank you for coming out and I hope you had a good time and learned something new or met a new MG friend! Our next health fair in CA will be in Irvine on May 31 (https://myasthenia.org/mgfa-events-webinars/community-health-fairs/). We will also have the LA MG Walk later this year on October 4 (https://myasthenia.org/mgfa-events-webinars/mg-walk/).
Our next meeting will be Sunday, March 16 at 10:00 AM. We will have an open group discussion. Please register in advance for this meeting at:. After registering, you will receive a confirmation email containing information about joining the meeting.
A reminder that the MGFA National Patient Conference in Phoenix, AZ is coming up on March 30 to April 1. There is a virtual attendance option if you can't make it in person. I will include the event details below along with upcoming meetings and events. Don't hesitate to reach out if you have any questions!
Southern CA Support Group
Date and Time: Saturday March 8, 2025 from 9-11am
Topic and Speaker: Health, Nutrition, and Wellness by Kristin Neusel, Patient Advocacy Liaison from UCB Pharmaceuticals
Meeting Link:
Meeting ID: 870 9588 8015. Passcode: 321655
One tap mobile
+16699006833,,87095888015# US (San Jose)
+16694449171,,87095888015# US
Contact: Connie DiPasqua, mgsocalgroup@gmail.com
Virtual Adaptive Yoga Program
Date and Time: March 5, 2025 (10:00 am PST) and March 12, 2025 (10:00 am PST)
Presenters: Vera Kiyasova, MD, NMD’s Medical Director and Yoga Therapist, and Deborah Vick, an adaptive yoga and mindfulness instructor
About: This program is designed to create a truly inclusive yoga community—one where people of all abilities can feel empowered through movement, mindfulness, and connection. Your insights will help us fine-tune this program to ensure it meets the needs of diverse abilities, making adaptive yoga more accessible to all.
Register:
Pacific Northwest Support Group
Date and Time: Thursday, March 13 at 6:30 PM
Meeting Link: Email pnwmgsg@gmail.com or cara.brown1@gmail.com
Check out this video of support group member and PNW Support Group Leader Cindy on "Navigating MG with mindfulness and hope"
San Diego Support Group
Date and Time: Saturday, March 15 at 9:00 A
Speaker: Liz Plowman PT, DPT, M.Ed
Meeting Link:
Date and Time: Tuesday, March 25 at 6:00 PM
Topic and Speaker: MG Basics, Cathy Ellis of Alexion
Meeting Link:
Date and Time: Tuesday, April 22 at 6:00 PM
Topic: Life Hacks
Meeting Link:
Date and Time: Tuesday, May 27 at 6:00 PM
Topic: MG Awareness
Meeting Link:
MGFA National Patient Conference
Date: March 30 to April 1
Location: Arizona Grand Resort and Spa, Phoenix, AZ
The National Patient Conference is an annual event that brings together all members of the MG community, including those living with MG, care partners, family members, and leading MG experts. The conference is filled with workshops, Q&A sessions, and opportunities for attendees to connect with one another and share their experiences. There is no cost for patients and care partners/family members to attend.
In- Person Registration:
Virtual Registration:
More Information:
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
MAYA Lead Volunteer
Community Health Fair Lead Volunteer
Email: mgwarriorssf@gmail.com, mgfamaya@gmail.com
January 15, 2025
January 15, 2025
Hi everyone,
Happy New Year and thank you for a great meeting this past weekend! ! I'm looking forward to another wonderful year with all of you.
To our group members in Los Angeles, we are all thinking of you and hope you are OK. Please don't hesitate to reach out if we can help in any way.
Our next “meeting” will be at the San Francisco Bay Area Community Health Fair on Saturday, Feb 15 from 9:00 AM to 1:00 PM at the Crowne Plaza Hotel in Foster City. Please see below for more information.
Our next virtual meeting will be Sunday, March 16 from 10:00 AM to 11:30 AM. Register at
Join our private Facebook group at: https://www.facebook.com/groups/mgsfsupportgroup
Below are topics we discussed during our last meeting, and upcoming meetings and events. If you ever need anything please reach out!
Topics Discussed:
Emergency preparedness: Shirl shared her preparation for evacuation guidelines (see attached). I’m also attaching her emergency binder information that she shared with us previously. Thank you also to Katie for sharing her bag and knowledge with us!
Blurred vision: we talked about blurred vision and dry eyes being common as well as using different eye drops. Some recommend blue light blocking or amber lens glasses. There are settings for your screen devices that can help with sensitivity (see links below).
Non-invasive ventilators, bipap: YouTube video on the different types https://www.youtube.com/watch?v=OZ3oXSUzfqM
SF Bay Area Community Health Fair
Date: Saturday, February 15
Time: 9:00 AM to 1:00 PM (Guest speakers at 10:00 AM and 11:00 AM)
Address: Crowne Plaza Foster City-San Mateo, 1221 Chess Dr, Foster City, CA 94404
Register for Free (please register each person attending):
Hotel Discount Booking: please contact me and I’ll send you the link!
The MGFA Community Health Fairs are an opportunity for MG patients and their loved ones to connect with each other and local/MG resources. We will have Dr. Muppidi and another guest speaker presenting. Registration and parking are free, and we will have coffee and light bites.
I am looking for local businesses/resources to host tables and talk to everyone. If you know of someone who might be interested, please let me know! I also need volunteers to help at the event, particularly manning our support group table. Let me know if you’d like to help! Please feel free to share the event with anyone that would be interested!
Myasthenia Advocacy for Young Adults (MAYA)
MAYA focuses on topics geared towards those ages 18 to 40 but is open to anyone.
Weekend Meeting Date and Time: Sunday, January 19 at 10:00 AM to 11:30 AM
Weekday Meeting Date and Time: Tuesday, January 21 at 4:00 PM to 5:30 PM
Register at:
Contact: Jessica Milanes, Hannah Ensor, mgfamaya@gmail.com
NEW San Diego Support Group
Date and Time: Tuesday, January 28 at 6:00 to 7:30 PM
Contact: Andrea Divis, mgsandiegogroup@gmail.com
Southern CA Support Group
Date and Time: Saturday, February 8 at 9:00 to 11:00 AM
Meeting ID: 871 4003 8382 Passcode: 069638
One tap mobile
+16694449171,,87140038382# US
Dial by your location
• +1 669 444 9171 US
Contact: Connie DiPasqua, mgsocalgroup@gmail.com
Seronegative Support Group
Date and Time: Saturday, February 8 at 2:00 to 3:00 PM ET
Link:
Meeting ID: 829 3410 3702
Contact: snmggroup@gmail.com
IgNS Patient 360 Virtual Conference
Date: March 8-9, 2025
The Only National Conference for Patients Receiving Immunoglobulin (Ig) Therapy
MGFA National Patient Conference
Date: March 23-25, 2025
Location: Arizona Grand Resort and Spa, Phoenix, AZ
More Information: https://myasthenia.org/mgfa-events-webinars/national-patient-conference/
The National Patient Conference is an annual event that brings together all members of the MG community, including those living with MG, care partners, family members, and leading MG experts. The conference is filled with workshops, Q&A sessions, and opportunities for attendees to connect with one another and share their experiences. There is no cost for patients and care partners/family members to attend. Registration information coming soon!
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
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
MAYA Lead Volunteer
Community Health Fair Lead Volunteer
Email: mgwarriorssf@gmail.com, mgfamaya@gmail.com
2024
2024
October
October
Hi everyone,
I hope you’re doing well! Thank you for attending our last meeting. We 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:
I have added a meeting on Monday, Oct 21 at 6:00 PM since last meeting was supposed to be a group discussion. Use the link below to register for the meeting:
Join our private Facebook group to connect with each other online: https://www.facebook.com/groups/mgsfsupportgroup.
Below are topics we discussed during the meeting and upcoming webinars and events. If you ever need anything don’t hesitate to reach out!
Topics Discussed:
NEW Website Page! Big thanks to Mike for putting this together! Check it out, it’s an awesome resource!
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
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
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
MAYA Lead Volunteer
Community Health Fair Lead Volunteer
Email: mgwarriorssf@gmail.com, mgfamaya@gmail.com
AUGUST
Hi everyone,
I hope you're doing well! I wanted to send our August meeting date as well as some upcoming
webinars/events. Let me know if there's anything I can do to help you in any way!
Stanford Support Group
Date: Tuesday, August 13 at 5:30 PM PT
Topic and Speaker: Traditional vs Newer Therapies by Dr. Neelam Goyal
MGFA Wellness Webinar
Date: Thursday, August 15 at 11:00 AM PT/2:00 PM ET
Topic and Speaker: Spend Your Spoons Wisely-- Energy Conservation and Pacing for Success with MG
by Liz Plowman, Physical Therapist and Fellow MGer
San Francisco Support Group
Date: Sunday, August 18 at 10:00 AM P
FREE Group Fitness Classes Month of August
Led virtually by fellow MGer, Vanetta, all levels are welcome! Classes are 45 minutes long and consist of
circuit style strength and aerobic training.
MG Patient Registry
The registry is a longitudinal, ongoing study that is truly inclusive and open to seronegative, ACHR+,
LRP4+, and MUSK+ MG patients with ocular and generalized MG. Any MG patient over 18 years of age
can participate, so it will not exclude certain patients like other research studies.
For more information: https://myasthenia.org/MG-Research/Join-the-MGFA-Global-MG-Patient-Registry
MGFA Help Line
Whether you are newly diagnosed with MG or have been living with the disease for some time, you're
likely to have questions about MG management from time to time. Having a reliable source of information
is vital, which is why the MGFA is excited about offering our MGFA Helpline. Professional counselors are
here to answer your questions about living with myasthenia gravis, provide emotional health support, and
guide you to resources to help you manage MG.
Phone Number: 1-833-647-8764
Hours: 9:00 AM - 8:00 PM EST
For more information: https://myasthenia.org/Living-With-MG/Find-Support/-MGFA-Helpline
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
MAYA Lead Volunteer
Community Health Fair Lead Volunteer
August 18
August 18
Hi everyone, I hope you’re doing well! Thank you for attending our last meeting. Our next meeting will be Sunday, Sept 29 at 10:00 AM. Link to register:
As I mentioned in the meeting, when I first made this group I made a private Facebook group as well. If you would like to join and connect with each other online here is the link: https://www.facebook.com/groups/mgsfsupportgroup
Below are topics we discussed during the meeting and upcoming webinars and events. If you ever need anything don’t hesitate to reach out!
Topics Discussed:
NEW Website Page! Big thanks to Mike for putting this together! Check it out at the link below, it's an awesome resourc
Cellcept and Prednisone- can affect blood sugar levels
Dry eyes common with autoimmune disease
Recommendations of Systane, Refreshe, warm eye compress (https://www.amazon.com/gp/product/B08HPBS21Y/)
Conserving spoons
Webinar from earlier this month: MGFA Wellness Series 2024: Energy Conservation and Pacing for Success with MG (https://www.youtube.com/watch?v=NjES3ZvFy6U)
Quote: Don’t let what you can’t do interfere with what you can do
Clinical Trials: Kyverna CAR-T Clinical Trial: see attachment. Kyverna is a local company based in Emeryville.
PNW Virtual Support Group
Date and Time: Thursday, September 12, 6:30 PM PT
Contact to register: pnwmgsg@gmail.com
Southern CA Support Group
Date and Time: Saturday, Sept 14, 11:00 AM PT
Registration required for virtual or In-person attendance
Speaker: Dr. Samir Macwan, Eisenhower Medical Center Myasthenia Gravis Neurologist
Sponsored by: Mike Glawe, OneSource, Education Manager- Neurology, West
Contact: Connie DiPasqua, mgsocalgroup@gmail.com
Spanish Language Virtual Support Group
Date and Time: Saturday, Sept 14, 1:00 PM CT
Contact: Leah Gaitan-Diaz, lamgchampions@gmail.com
Myasthenia Advocacy for Young Adults (MAYA) Virtual Support Group
Date and Time: Tuesday, Sept 17, 4:00 PM PT
Register at:
Date and Time: Sunday, Sept 22, 10:00 AM PT
Register at:
MGFA Research Webinar
Date and Time: Thursday, Sept 26, 12:00 PM EST
Topic and Speaker: Living Better with MG: How AI Enhances Treatment and Management, Dr. Arrash Yassaee, Global Clinical Director at Huma and Ben Irving, VP of AI at Huma
Register at:
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:
Sincerely,
Jessica Milanes
San Francisco Myasthenia Gravis Support Group Leader
MAYA Lead Volunteer
Community Health Fair Lead Volunteer
Email: mgwarriorssf@gmail.com, mgfamaya@gmail.com
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