Southern California Support Groups

Support groups provide a forum to share feelings, concerns, information, as well as a place to offer peer support and encouragement. Solicitations or research projects are not conducted at support group meetings.

Support groups often feature speakers specializing in scleroderma or related topics. To find out information about upcoming speakers or meeting topics, please contact the support group leader or chapter office.

These schedules are subject to change. Before attending a group for the first time, please call to verify date and time. Groups are free of charge and open to everyone, including patients, caregivers, family and friends.

Click a link to jump below to view more information about one or our support groups:

Support Group Announcements and Updates

Note: Due to COVID restrictions and for the safety of our participants all meetings will be held virtually until further notice.

Please visit our Facebook page for announcements, changes, alerts, etc. www.facebook.com/sclerodermasocal

Combined Support Groups

Combined support group meeting with Guest Speaker: Ed Harris from the Scleroderma Education Project
Topic: "Understanding ANA and Antibody Testing for Systemic Sclerosis - A Helpful Guide for Patients and Clinicians"
When: May 15, 2021 10:30 AM Pacific Time (US and Canada)

Please register in advance for this meeting:
https://zoom.us/meeting/register/tJwvc-2vrzMqHdLp2brOwuD0ldBjv7ZqOdqZ
After registering, you will receive a confirmation email containing information about joining the meeting.

An Introduction to Ed Harris and The Scleroderma Education Project:

Ed Harris

The Scleroderma Education Project is a nonprofit solely focusing on the systemic forms of scleroderma, with a primary mission of education, from basic information for patients and family members to advanced information that can be useful to clinicians who are not scleroderma specialists. In addition, the Scleroderma Education Project is also advancing research that is focused on better understanding the early stages of the systemic scleroderma disease process with the hope that this might lead to new treatment approaches.

In early 1990, founder, Ed Harris, was diagnosed with systemic scleroderma. At the time of his diagnosis, Ed was running one of the larger software companies in the US, a company he co-founded in 1982. In addition to having advanced degrees in mathematics and computer science, Ed also had graduate training as a research clinical psychologist, a key component of his remarkable story.

Ed wanted to try to help others deal with this terrible disease and with his computer background and the recent growth of the Internet, he created a website designed to educate scleroderma patients so they could work more effectively with their team of physicians to make the best possible individual care decisions. This website initially just called the Scleroderma FAQ™ was launched in 1996 and for many years was one of the main sources of online information available to patients around the world. Now part of the Scleroderma Education Project website, the Scleroderma FAQ is a comprehensive, up-to-date, unbiased, research-based document that incorporates the latest in medical research but is written in a manner that can be understood by scleroderma patients with no medical training.

In July 2014, Ed launched a completely redesigned Scleroderma Education Project™ website, located at SclerodermaInfo.org. The Scleroderma Education Project website includes a completely updated version of the Scleroderma FAQ, a Guide for New and Future Patients (also available in Spanish), and a series of technical articles on advanced topics like ANA and antibody testing. New articles and blog posts are constantly being added to the website, including some articles that are focused on educating clinicians as well as patients. In early 2016, the Scleroderma Education Project was recognized as a 501(c)(3) tax-exempt non-profit organization by the United States Internal Revenue Service (EIN: 81-1450999). The Scleroderma Education Project is entirely staffed by volunteers, so all contributions are used to advance scleroderma education and research.

In 2015, Ed made the decision to expand the mission of the Scleroderma Education Project to include fostering new research based on the novel disease pathogenesis model that he originally proposed in 1993. Their expanded Research Advisory Board (RAB) now includes researchers with expertise in blood rheology (biophysical properties of blood), antibodies, therapeutic plasma exchange (TPE), and immunology – the skills they feel are needed to advance this new research effort. Our group has written and presented research posters at three medical conferences over the past several years, including the American Association of Blood Banking annual meeting in October 2015, the American Society for Apheresis annual meeting in May 2016, and the American College of Rheumatology annual meeting in November 2016.

In March 2018, a major review paper titled Therapeutic Plasma Exchange for the Treatment of Systemic Sclerosis: A Comprehensive Review and Analysis was published in the research journal of Scleroderma and Related Disorders. Ed was the lead author of this paper. He is currently working on a follow-on research paper that will explore the background research that may explain how and why therapeutic plasma exchange leads to symptom improvements documented in the recently published review paper.

In addition to working on new research focused on determining the role of abnormal blood rheology (physical characteristics of blood) in the development of systemic sclerosis symptoms, Ed continues to work as a patient advocate and educator.

Young Adult Support Group (Ages 17 - 30's)
Meeting virtually twice a month on zoom.

Our young adult support group meetings provide a safe place to meet people your age living with scleroderma, where you can receive support, have some laughs and make long lasting friendships with others who truly understand what you're going through. Click Here to see our video.

To find out more about our young adult support group or to join a meeting, please email our young adult support group leaders below:

Support group Leaders:

Shervin Ghanoongooi
sghanoongooi@scleroderma.org

Fatema Shahab
chronicbossbabe@gmail.com

Bakersfield
Kern County Support Group
Meetings are on Saturdays, 10 a.m. to 12 p.m., every other month
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Stephen Elrod
Phone: 661-201-1759
Email: stephenelrod168@yahoo.com

2021 Schedule:

TBA

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Camarillo/Ventura County
Ventura County Support Group
Saturday, 10 a.m. to 12 p.m.
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Tina Burger
Phone: 310-699-7290
Email: tburger@scleroderma.org

2021 Schedule:

TBA

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Central Coast
Central Coast Support Group (Servicing Northern Santa Barbara and San Luis Obispo County)
Saturday, 11 a.m. to 1 p.m., every other month
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Jennifer Wood
Phone: 805-878-6261
Email: sclerodermawarrior2021@yahoo.com or
Contact: Pat Muran (Habla Español)
Phone: 805-459-2362
Email: pat.ccssg@gmail.com

2021 Schedule:

TBA

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Crescenta Valley/Pasadena
Crescenta Valley Support Group
Saturday, 10 a.m. to 12 p.m. (see schedule below)
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Alejandra Serrano
Phone: 213-245-7439
Email: sclerowarrior18@gmail.com

2021 Schedule:

Crescenta Valley Peer Support Group meeting on Zoom.

When: Apr 24, 2021 at 10:00 AM Pacific Time (US and Canada)

https://zoom.us/meeting/register/tJYqcemrrj8uH9c1sOk43snz1-d5vwZ-afcS

After registering, you will receive a confirmation email containing information about joining the meeting.

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Imperial County/El Centro
Imperial County Support Group
Call for next meeting date and location
Location: (We are currently not meeting in person. Meetings are via Zoom only)

Contact: Debi Gray
Phone: 760-554-4942
Email: ivsclerogroup2017@yahoo.com.

2021 Schedule:

TBA

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Inland Empire/San Bernardino
Riverside Support Group
10 a.m. to 12 p.m.
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Lisa Parks
Phone: 951-288-0728
or
Contact: Christine Haddad
Phone: 909-754-5934
Email: iesclerogroup@gmail.com

2021 Schedule:

TBA

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Los Angeles
Los Angeles Support Group
10am – 12pm
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Tina Burger
Phone: 310-699-7290
Email: tburger@scleroderma.org

2021 Schedule:

TBA

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Orange County
The Orange County Scleroderma Support Group
Meetings are held on the SECOND Saturday of alternate months, 11:30 a.m. to 2 p.m.
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Bonnie Copeland
Phone: 714-606- 6059
Email: bonmail@pacbell.net
or
Contact: Roberta Hines
Phone: 562-745-8075
Email: hines.roberta50@gmail.com

2021 Schedule:

TBA

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Palm Desert
Desert Area Support Group
We are looking for a new support group leader. If you are interested in leading a support group in this area, please contact Tina Burger tburger@scleroderma.org. No experience needed; we will help train and get things started.
Contact: Tina Burger
Phone: 424-227-6475
Email: tburger@scleroderma.org

2021 Schedule:

TBA

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San Diego/Encinitas
Encinitas Support Group
Saturday, 10 a.m. to 12 p.m., every other month
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Kelly Clemeshaw
Phone: 760-855-3449
Email: kclemeshaw@gmail.com

2021 Schedule:

Mar 13 - “Life in the Pandemic” Speaker: Dr. Brian Pedersen
If you are interested in attending this meeting, please contact the support group leaders for further information or to provide the link Susan Okunosokuno@yahoo.com Kelly Clemeshaw kclemeshaw@gmail.com

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San Diego/Mission Valley
Mission Valley Support Group
Saturday, 10 a.m. to 12 p.m., every other month
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Susan Okuno
Phone: 619-246-9393
Email: sokuno1@yahoo.com

2021 Schedule:

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San Fernando Valley/Sherman Oaks
San Fernando Valley Support Group
Sunday, 11 a.m. to 1 p.m., every other Month (2nd Sunday)
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Map and directions
Contact: Kelly Ryan
Phone: 818-974-2428
Email: Kelly@kellycryan.com

2021 Schedule:

TBA

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Santa Barbara
Santa Barbara Support Group
Meetings are on Saturdays, 10 a.m. to 12 p.m.
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Elizabeth Duprey
Phone: 408-829-2718
Email:dupreyeliz@yahoo.com
or
Contact: Cindy Cattaneo
Phone:  (805) 895-7384
Email:  ccattaneo123@gmail.com

2021 Schedule:

TBA

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Whittier/San Gabriel
Whittier/San Gabriel Support Group
10 a.m. to 12 p.m.
Location: (We are currently not meeting in person. Meetings are via Zoom only)
Contact: Penni LaVoot
Phone: 714-313-8539
Email:plavoot@gmail.com

2021 Schedule:

TBA

San Gabriel Valley Peer Support Group
Contact: Catherine Baca
Phone: 626-232-8449
Email: MyLivingSpecialist@gmail.com

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Southern California Support Groups

Combined Support Groups