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Scleroderma Foundation
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eLetter #733 | October 20, 2017  

YouTube Video Sean Burlile

Video - Compassion Fatigue: 
Avoiding Burnout as a Caregiver

Recorded at the Scleroderma Foundation’s 2017 National Patient Education Conference, Sean Burlile, Ph.D., addresses “Compassion Fatigue.” The session includes recognizing symptoms, strategies for self-care, and developing a self-care plan including relating to a support group.

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Grassroots Advocacy Training
Webinar: Monday, October 23, 2 p.m. Eastern

The Scleroderma Foundation’s Advocacy Committee is launching a six-part training series of grassroots advocacy webinars beginning Monday, October 23 at 2 p.m. Eastern. The webinars are hosted by Dee Burlile (Southern Idaho support group leader), Shelley Van Pelt (Washington Evergreen Chapter board member), and David Murad (Director of Chapter Relations). 

Topics range from creating an effective “elevator speech” for talking about scleroderma with friends and neighbors to preparing for meetings with elected officials in your community and on Capitol Hill

To join the free webinar and for information about the training series, please visit the foundation’s Advocate Resources page.  All webinars will be recorded and posted to the foundation’s official YouTube channel.  

Ai P Lam MD Scleroderma Researcher

Scleroderma Researcher Profile

Ai P. Lam, M.D., Assistant Professor of Pulmonary & Critical Care Medicine at Feinberg School of Medicine, Northwestern University, is a Scleroderma Foundation funded researcher.  Of her foundation funded research, Dr. Lam says, “So excited to partner with [Scleroderma Foundation], finding new treatments for systemic sclerosis by targeting Wnt/b-catenin signaling in lung, blood immune cells.”

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Lung Transplant Foundation logo

Lung Transplant Webinar

As part of Lung Transplant Week at the American Thoracic Society (ATS) and in conjunction with Public Advisory Roundtable (PAR) partner the Lung Transplant Foundation, ATS hosts a live webinar on Wed., Oct. 25 at 12 Noon ET.  The webinar is entitled, "Improving Success for Lung Transplant Patients and Caregivers Through Mentorship." Presentations are from a number of different speakers.

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Thermometer Wool Cap

Get Help with Your Energy Bills

Use this online resource from LIHEAP (Low-Income Home Energy Assistance Program), to find resources to help pay for heating bills this winter.  LIHEAP is a federally-funded program that helps low-income households pay their home heating and cooling bills.

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Help Paying for Meds and More 

NeedyMeds is a 501(c)(3) national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs.

Sue Lane and Bob Kristof vertical

National Volunteers of the Year

Sue Lane of El Paso, Texas and Bob Kristof of Cheswick, Pennsylvania received the National Volunteers of the Year Award for their outstanding service and contributions to the Scleroderma Foundation.  Their combined efforts have had a significant impact on raising awareness and promoting chapter events from the Pacific Northwest to Southeast Florida.  Bob records PSAs (Public Service Announcements) to promote Stepping Out, Scleroderma Awareness Month, and other events.  Sue reaches out to radio stations in local markets to gain placement on the air.  Over the past year, Bob and Sue have placed 200 scleroderma related messages that have aired on numerous ratio stations in 12 states.

volunteer opportunities

 phildelphia Patient Ed save the date 2018 

2018 National Patient Education Conference

Sign up for e-Alerts to stay up to date on the 2018 National Patient Education Conference in Philadelphia, Pennsylvania, July 27-29.

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Stepping Out 2017

2017 has been a productive year for Stepping Out to Cure Scleroderma, albeit not without significant challenges.  Most notably Hurricane Harvey disrupted plans for Stepping Out Houston.  Since January, Stepping Out had 60 events scheduled with 8,271 registrations, and the event generated nearly $1 million in revenue that includes $175,000 in registration fees, $485,000 in online donations, and $337,000 in offline donations.

Stepping Out

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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