| December 15, 2023 | #1053 |
|
|---|
| | | A winter wonderland of updates from CEO Mary Wheatley, IOM, CAE It's a winter wonderland of updates in this month's CEO Update. As 2023 comes to a close, CEO Mary Wheatley, IOM, CAE, reflects on our 25th Anniversary, support opportunities during the holiday season, and much more. Check out our CEO Update: December 2023, to see how we are closing out the year! |
|
|---|
| | | 4 smart ways to give before 2023 ends Are you hoping to close this year with a charitable gift that supports the scleroderma community and reduces your taxes? Read the inside scoop at the link below. |
|
|---|
| | | | | 25th Anniversary – one moment at a time 2016 - Raising International Awareness
An international awareness campaign launched as the National Scleroderma Foundation partnered with the Scleroderma Society of Canada and the Scleroderma Research Foundation to focus on the challenges individuals with scleroderma face. The campaign was called "Scleroderma Hard Word, Harder Disease." Also that year, the Foundation's National Medical and Advisory Board designated a new Scleroderma Center, Massachusetts General Hospital, in Boston, Massachusetts.
|
|
|---|
| | | As we approach the 2024 Stepping Out to Cure Scleroderma season, who are you walking for in 2024? Many of us walk for loved ones, friends, or even ourselves. We will kick things off on February 24, 2024, with the Florida & Puerto Rico chapter's Coconut Creek walk, followed by exciting events in various other Chapters. Join us in Stepping Out to Cure Scleroderma and show your support for everyone affected by scleroderma. |
|
|---|
| | | New research study for working adults with scleroderma Adults (18 years old or older) who are working and have systemic scleroderma (systemic sclerosis): A research team is studying a virtual intervention to support people with scleroderma who are in the workforce. For more info, E-mail mthelanderhill@salud.unm.edu or jpoole@salud.unm.edu. |
|
|---|
| | | Clinical trials just became simpler to join Are you looking for a clinical trial suited for you? Our partnership with Carebox and the Carebox Connect portal allows you to complete a short, six-question questionnaire and instantly see which clinical trials are potentially relevant for you. Are you looking for a clinical trial suited for you? Joining scleroderma clinical trials just became easier and more efficient for individuals living with scleroderma, their caregivers and health care professionals. |
|
|---|
| | | Stay tuned for the 2024 National Scleroderma Conference We cannot wait to see you all at the 2024 National Scleroderma Conference in Bellevue, Washington! Stay tuned for more details to come. |
|
|---|
| | | BIPOC Support Group Holiday Pajama Jam ZOOM: Dec. 17, 4 p.m. ET
You are invited to the BIPOC (Black, Indigenous, People of Color) Support Group Holiday Pajama Jam. This social event offers a great opportunity to connect with members in a relaxing atmosphere. Our holiday social will include music, a trivia game, stories, and prizes. Don’t forget to wear your holiday pajamas!
We encourage you to register in advance for this event. Upon registering, you will receive a confirmation email containing information about joining the meeting.
|
| ZOOM: Dec. 19, 7 p.m. ET
The Localized Support Group for Adults and Parents hosts its meeting on the 3rd Tuesday of the month at 7 p.m. ET. Please email localizedsg@scleroderma.org for the zoom link.
|
|
|---|
| | Bereavement Support Group ZOOM: Dec. 19, 7 p.m. ET
If you have lost a loved one to scleroderma, you may find support and solace in speaking with others who are grieving or have been through a journey similar to yours. Our monthly bereavement support group will begin on Tuesday, Dec.19, from 7:00-8:30 p.m. ET. If you are interested in learning more, please email bereavement@scleroderma.org.
|
| ZOOM: Dec. 20, Noon ET
The Upper Great Lakes Chapter is proud to welcome Tami Stafford, Registered Respiratory Therapist! Tami Stafford has been a Registered Respiratory Therapist for 28 years. Throughout her career she has worked for the Cleveland Clinic, McLaren Port Huron, and McLaren Medical Group, working with all patient populations including neonatal, pediatric, and adults. She recently transitioned from the clinical to the educational environment and now serves as the Director of Clinical Education and Professor of Respiratory Therapy at St. Clair County Community College in Port Huron, MI. Her focus is to educate, train, and produce future Respiratory Therapists. |
|
|---|
| | | | This week in scleroderma news:
|
|
|---|
| | | | | | | | | If you no longer wish to receive this weekly message from the National Scleroderma Foundation, you may unsubscribe. |
|
|---|
| |
|
