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THE SCLERODERMA SUPPORT GROUP LEADER EDUCATION (SPIN-SSLED) PROGRAM

Running a support group is no easy task.

People with rheumatic diseases around the world count on support groups for education about their disease and emotional support. In scleroderma, many support group leaders feel overburdened or lack the training and resources to lead their groups effectively. To support these leaders and encourage new leaders to form their own support groups, SPIN has partnered with scleroderma support group leaders to create the SPIN-SSLED Program. This 13-week training program provides leaders with information and resources to help them feel more comfortable, confident and supported in their roles, and contribute to a more positive support group experience.

Introduction

Support Group Leader Testimonials

About the SPIN-SSLED Program

  • 13 weekly sessions of 60-90 minutes led by a trained instructor

  • Each week tackles one aspect of leading a support group, including structuring a group meeting, recruiting new members, fostering a positive group culture, supporting yourself as a leader, and many other topics

 

  • Participants can attend the online videoconference sessions from the comfort of their own homes

 

  • Supplementary resources include:

  1. A workbook that summarizes all modules.

  2. An online forum where participants can discuss what they’ve learned with other participants.

  3. An online Resource Centre with educational videos and support group activity ideas.

 

  • At the end of 13 weeks, participants receive a certificate attesting that they have successfully completed the program

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Are you interested in trying the SPIN-SSLED Program?

SPIN researchers are continuing to provide the SPIN-SSLED Program training in partnership with patient organizations.

You may be eligible to join our trial if you:
1. Are a leader of a scleroderma support group or are working with/would like to work with a participating patient organization to start a support group.
2. Are at least 18 years old.
3. Have regular access to a computer and Internet connection.

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If you fulfill the criteria above and are interested in trying the SPIN-SSLED Program, please contact your patient organization.

Virtual Support Group Central Database

One of the goals of the SPIN-SSLED Program is training new or current support group leaders to run virtual support groups accessible to patients from different geographical locations, especially where no in-person support group exists. During the current COVID-19 pandemic, virtual support groups are great tools to help receive emotional support and connect with other individuals living with scleroderma. Please see a list of available virtual scleroderma support groups run by SPIN-SSLED graduates below. The table will be updated periodically. If you are interested in joining one of the virtual support groups listed below, please contact the responsible person for more information. 

Group name
Patient organization/chapter
Who is eligible to participate?
Meeting frequency
Meeting day
Meeting time
Contact person
Email address
Phone number
Notes
Wellington Scleroderma Support Group
Scleroderma New Zealand
We welcome any person with scleroderma and caregivers/loved ones. People with scleroderma, men with scleroderma, young adults with scleroderma‚ caregivers of people with scleroderma.
Sometimes more often as the need is required.
Saturday
1:30 pm New Zealand Daylight Time
Dianne Purdie
diannepurdie@xtra.co.nz
64-04-479-5548
Our meetings are for support and sharing experiences with managing scleroderma. We can get along speakers if that is what the people would like. We are a cheerful welcoming group of people.
Newnan-Peachtreecity Scleroderma Group
National Scleroderma Foundation, Georgia
Scleroderma patients, caregivers, family members and invited guests.
Every month
Sunday
3:00 - 5:00 pm Eastern time
Demetra Newton
demetranewton@yahoo.com
470-303-0234
We also welcome others who don't have scleroderma such as Lupus patients, Sjogrens, Raynauds and etc.
Doylestown Scleroderma
SFDV.org
Anyone with scleroderma and their caregivers/loved ones.
Every month
Tuesday
6:00 - 7:30 pm Eastern time
Kelly Kelly
kelly.a.kelly@comcast.net
1-215-805-6680
We meet 4th Friday of every month via Zoom platform.
Virtual Education Sessions
Scleroderma Victoria
Anyone with scleroderma and their caregivers/loved ones.
Every month
Saturday
10:30 am Australian Eastern time
Louise Inglese
events@sclerodermavictoria.com.au
61-3-9231-3651
The sessions will be held on the second Saturday of each month at 10:30 am. Hear from experts, stay up to date on research and share knowledge on many appropriate topics.
Scleroderma Awareness Philippines
Scleroderma Society of the Philippines
Anyone with scleroderma and their caregivers/loved ones.
Every 3 months
Sunday
1:00 pm Pacific time
Catherine Policarpio
chie.policarpio@gmail.com
63-2917817244
Our aim is to raise awareness about Scleroderma / Systemic Sclerosis in the Philippines.
Scleroderma SASK
Scleroderma Saskatchewan
Anyone with scleroderma and their caregivers/loved ones.
Every 6 months
Wednesday
1:00 pm Central time
Tracey Magee
tracey.scleroderma@sasktel.net
1-306-539-3291
Hoping to move to more meetings per year now with the virtual option. Day of the week and time subject to change.
Scleroderma Philippines Support Group
Scleroderma Philippines
Anyone with scleroderma and their family from the Philippines or of Filipino descent.
Every month
Sunday
1:00 pm Philippines Time
Rowena Lou Ortiz
rowena_ortiz2000@yahoo.com
63-927-021-7017
Aside form the monthly webinars/meetings, we also have an active closed group on Facebook, https://www.facebook.com/groups/2146521595452709
Steel City Support Group
Scleroderma Foundation, Western Pennsylvania Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Saturday
3:00 pm Eastern time
Tim Graettinger
tgraettinger@verizon.net
1-724-743-3462
We welcome young adults, but there are none currently in the group.
Multiple, see Tri-State Chapter website calendar.
Scleroderma Foundation, Tri-State Chapter
Anyone with scleroderma and their caregivers/loved ones.
See Tri-State Chapter calendar.
Saturday
See Tri-State Chapter calendar.
April Roberts
aroberts@scleroderma.org
1-607-723-2239
The Tri-State Chapter has anywhere from 5-10 meetings per month and we are open to anyone. We list them on the Tri-State website calendar. I am able to give you specifics to each meeting. April Roberts is the Office Administrator and Ariel Galvez is the Program Services Manager.
Rochester Scleroderma Support Group
Scleroderma Foundation, Tri-State Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month, from March to November
Saturday
1:00 - 3:30 pm Pacific time
Edith D. Reynolds
ladydi2u1956@yahoo.com
1-585-309-3819
Edith D. Reynolds is the co-leader. Marilyn Sibley is the Support Group Leader.
SYNC (Scleroderma Young Adults Needing Connection)
Scleroderma Foundation, Tri-State Chapter
Anyone with scleroderma between the ages of 18-42.
Every month
Friday
7:00 - 8:30 pm Eastern time
Amy Gietzen
agietzen@scleroderma.org
1-716-479-0756
We are more of a social group not a normal structured group we meet to connect with others who are going through the same thing.
New York City Support Group
Scleroderma Foundation, Tri-State Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Wednesday
6:00 pm Eastern time
Zeba Hyder
NYNY@sclerodermatristate.org
1-212-777-2832
The sessions are held on every first Wednesday of the month.
Virtual Support Group hosted by DFW Team
Scleroderma Foundation, Texas Bluebonnet Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Sunday
2:00 pm Central time
Diane Lee
dlee@scleroderma.org
1-817-637-5485
We meet on the 2nd Sunday of the Month. Other support group co-leaders are Lilly Witherspoon and Alexis Harrison.
Virtual Young Adult Support Group
Scleroderma Foundation, Southern California Chapter
Young adults with scleroderma.
Every month
Monday
7:00 pm Pacific time
Tina Burger
tburger@scleroderma.org
1-310-699-7290
-
Los Angeles Scleroderma Support Group
Scleroderma Foundation, Southern California Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Saturday
10:00 am Pacific time
Tina Burger
tburger@scleroderma.org
1-310-699-7290
There are several other groups per city and monthly combined meetings for all 13 support groups in Southern California.
Scleroderma Virtual Support Group
Scleroderma Foundation, Southeast Florida Chapter
Any person with scleroderma and caregivers/loved ones
Every month
Saturday
11:00 am Eastern time
Beth Taber
Go to website: scleroderma.org/sefl
1-305-801-1837
Some meetings have speakers but not all. Recently we had a virtual patient education day with three speakers a Rheumatologist, a GI doctor, and a mental health professional.
Miami Bilingual Support Group
Scleroderma Foundation, Southeast Florida Chapter
Bilingual (English & Spanish) or Spanish-speaking only scleroderma patients and their caregivers.
Every month
Friday
11:00 am Eastern Time
Monica Ramirez
Miamiradgroup@gmail.com
1-786-300-1242
-
Southeast Florida Support Group
Scleroderma Foundation, Southeast Florida Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Saturday
11:00 am Eastern time
Jessica Massengale
Sclerostrong@gmail.com
1-954-298-8432
-
Granite State Support Group
Scleroderma Foundation, New England Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Saturday
10:00 am Eastern time
Carla E King
carla.king@comcast.net
1-978-884-4866
We would love to include new folks from all around!
Northwest Chapter
Scleroderma Foundation, Northwest Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Friday
10:00 - 11:30 am Pacific time
Vicki L Hollmann
vickihollmann@gmail.com
1-360-731-7563
We try to give everyone a chance to share their experiences and give support and encouragement.
Dayton Area Support Group
Scleroderma Foundation, Ohio Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every 2 months
Saturday
10:00 am Eastern time
Penny Davis
Dayton-sg@sfohio.org
937-554-1425
Very friendly but small group
Charleston Area Scleroderma Patient Support Group
Scleroderma Foundation, South Carolina Scleroderma Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Saturday
11:00 am - 12:30pm Eastern time
Patti Newman
pttnewman@gmail.com
1-843-817-2038
We welcome scleroderma patients and their caregivers, regardless of what kind of scleroderma they have, how long they've been diagnosed, age, gender, color, ethnicity, etc. We want everyone to feel welcome and included. Please contact Patti Newman and Sarah Budd (co-facilitator, chimerical1@hotmail.com, 1-843-452-3521).
Fall River/ Bristol County Support Group
Scleroderma Foundation, New England Chapter
Anyone with scleroderma and their caregivers.
Every month
Wednesday
7:00 pm Eastern time
Donna Bernier
donnabdab2@hotmail.com
1-774-488-6775
We started going virtual in July 2020.
Des Moines/Ames Scleroderma Support Group
Scleroderma Foundation, Heartland Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Tuesday
6:30 pm Central time
Barbara Burke
d_bburke@netins.net
1-515-321-0621
-
Autoimmune and Scleroderma Support Group
Scleroderma Foundation, Michigan Chapter
Any scleroderma or autoimmune patient, their family, friends, caregivers.
Every month
Saturday
9:30 - 11:30 am Eastern time
Peggy Collins
peggyscollins@hotmail.com
1-810-417-0926
We are a pretty inclusive group with members from all over the US, plus some in other countries. In addition to the monthly support group, people can be added to our private Messenger group for added connections throughout the month.
Boston Area Support Group
Scleroderma Foundation, New England Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every month
Tuesday
7:00 - 9:00 pm Eastern time
Mary McClay
sclerodermaboston@gmail.com
1-774-222-2820
Our in person meetings in the past were held from 2:00 - 4:00 p.m. on the third Sunday of every month. Even when we can meet in person again, we still intend to keep a virtual meeting as well.
Omaha Scleroderma Support Group
Scleroderma Foundation, Heartland Chapter
Anyone with scleroderma, their family, friends, or caregivers for a friend/relative looking to know more about the disease.
Every 2 months
Tuesday
6:30 - 8:30 pm Central time
Jackie Latka
jackiehughes@hotmail.com
1-402-680-135
We meet on the 3rd Tuesday of every other month beginning in January, March, May, etc.
West Suburban Chicago Scleroderma Support Group
Scleroderma Foundation, Greater Chicago Chapter
Anyone with scleroderma, their family, and friends, of any age.
Every month, 9 months/year
Saturday
We rotate from Monday 7:00 pm, Thursday 2:00 pm, to Saturday 10:00 am Central time
Edie Northfield
WSubChiSclero@yahoo.com
1-630-212-3057
There are no children in our group.
North Shore Scleroderma Support Group
Scleroderma Foundation, Greater Chicago Chapter
Anyone with scleroderma and their caregivers/loved ones.
Every 2 months
Saturday
10:00 am - 12:00 pm Central time
Franny Kaplan
nsscleroderma@gmail.com
1-847-533-5075
We are meeting on Zoom and may meet more often in winter.

Last updated on November 29th, 2022

SPIN-SSLED Funders

The SPIN-SSLED program has been funded by the Scleroderma Society of Ontario, the Canadian Institute for Outcomes in Rheumatology Care, and the Canadian Institutes of Health Research.

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