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Scleroderma Foundation
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20th anniversary Scleroderma Foundation logo 72 dpi banner
eLetter #782 | October 5, 2018  

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Columbus Day Holiday

In observance of the Columbus Day holiday, the Scleroderma Foundation's National Office will be closed on Monday, October 8.

scleroderma.org 

YouTube 2018 Farrell

 

Conference Video:
"Medical Information Toolkit: How to Find Reliable Medical Information on the Internet"

At the 2018 National Patient Education Conference we filmed Jessica Farrell, Pharm.D., Albany College of Pharmacy and Health Science, giving a presentation about the overwhelming amount of medical information on the Internet and questions about the trustworthiness and accuracy of health information online. Her presentation provided an overview and a “Toolkit” for finding reliable health and medical information online.

watch this video & others from the 2018 conference

2018 Chapter Volunteer of the Year Debbie Metz

Chapter Volunteer of the Year

The 2018 Chapter Volunteer of the Year Award recognized Debbie Metz of the Ohio Chapter for fulfilling numerous chapter leadership roles, including chapter board president, event planner, national committee member, and support group leader.  Her contributions to the Ohio Chapter and to the Scleroderma Foundation are too many to list.  Her commitment and dedication are best illustrated by her approach to new support group members. When someone with scleroderma contacts her about attending the group, Debbie makes the extra effort to meet them in person, to get to know them before the next scheduled meeting.  Congratulations Debbie!

scleroderma.org/conference

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PHA on the Road

October 27, Milwaukee, Wisconsin

PHA on the Road is a free education and networking event for individuals with pulmonary hypertension (PH) and their families.  PHA will be “on the road” in Milwaukee, Wisconsin, Saturday, October 27, to make connections with families living with PH and to provide education, support, and networking opportunities – all free of charge. 

Milwaukee, Wisconsin, October 27

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Kids Get Scleroderma Too

October 26 & 27, Aurora, Colorado

The Rocky Mountain and Tri-State Chapters are excited to co-host “Kids Get Scleroderma Too” on October 26 and 27, 2018, at Children’s Hospital Colorado in Aurora, Colorado. This event is for youth and teens who have scleroderma, and their parents and siblings. Juvenile scleroderma experts from around the country will lead educational sessions and group discussions.  Friday night features a fun Halloween costume party for the whole family!  Scholarships are available.

register today: 2018KGS2.sclerodermatristate.org​

Join Inspire!
 

Question About Pulmonary Function Test Results

If you have questions about medical tests, like the Pulmonary Function Test, it's often helpful to talk with others who've experienced the same test to see what it was like for them.  Where do you find someone like that?  On Inspire.com.  The Scleroderma Foundation's online community at Inspire.com is 40,000 people strong.  People who are affected by scleroderma.  They're always happy to share their experience to help you.  

Join the conversation at Inspire.com

steffens 2015


Research & Treatment Centers

Steffens Scleroderma Center

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In the Albany, New York, area go to the Steffens Scleroderma Center, with offices in Albany and Saratoga Springs.   

Stepping Out Logo 2018 Be Part of the Cure
 

Step Out to Cure Scleroderma in September & October

Rally your family and friends for a brisk fall walk to raise money to help people with scleroderma through support, education, and research.  Attend a Stepping Out to Cure Scleroderma walk or 5K run in Texas, Pennsylvania, or Oklahoma.

10/6 - Dallas, TX • 10/7 - Philadelphia, PA
10/13 - Broken Arrow, OK

sign up to walk today!

John Varga M.D.

Reach for the Cure

“The Scleroderma Foundation has made grants…that have allowed young people to get over this initial critical phase in their career when they begin to think about what area to work in in terms of their research. And, having that, even small grant, that allows them to focus on scleroderma has made the difference.” - 
John Varga, M.D., Northwestern University

reach for the cure

Voice Fall 2018 Cover

Winter Voice Published Online Only

Subscribers to Scleroderma Voice should note that the winter edition will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

CLINICAL TRIAL PARTICIPATION

Scleroderma Lung Study III
 

Scleroderma Lung Study III

Combining the Anti-Fibrotic Effects of Pirfenidone (PFD) with Mycophenolate (MMF) for Treating Scleroderma-Related Interstitial Lung Disease

Scleroderma Lung Study III (SLS III) is focused on the treatment of pulmonary fibrosis and is being conducted at 17 different centers throughout United States.  To participate, patients must meet the following criteria:

  • Be at least 18 years old
  • Have systemic scleroderma such as limited (previously called CREST syndrome) or diffuse scleroderma
  • Disease duration within 7 years from first symptom (other than Raynaud’s phenomenon), such as puffy fingers or skin thickening
  • Have shortness of breath
  • Documented lung or pulmonary fibrosis
  • Not have other serious illnesses
  • Meet other eligibility criteria that you study doctor will explain to you as part of the evaluation process.  

read more on ClinicalTrials.gov

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

reata_horizontal_logo-2018-Bronze Natl


Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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