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
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13 weekly sessions of 60-90 minutes led by a trained instructor
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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
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Participants can attend the online videoconference sessions from the comfort of their own homes
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Supplementary resources include:
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A workbook that summarizes all modules.
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An online forum where participants can discuss what they’ve learned with other participants.
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An online Resource Centre with educational videos and support group activity ideas.
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At the end of 13 weeks, participants receive a certificate attesting that they have successfully completed the program
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.
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.
