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eLetter #778 | September 7, 2018  

 

2018 Pulmonary Fibrosis Awareness Month

 

September is Pulmonary Fibrosis Awareness Month

Pulmonary Fibrosis Awareness Month is heavily influenced by social media engagement.  The first step is to follow the Pulmonary Fibrosis Foundation on social media on Facebook, Twitter, and Instagram (use our handle, @pfforg). To learn more about their initiatives, reach out to socialmedia@pulmonaryfibrosis.org or download the official Planning Guide. In the guide, you’ll find more information, tips, and details about each activity. 

 

Download the PF Awareness Guide

YouTube Poole Hands and Face 2018

 

 

Conference Videos:  "Taking Care of Your Hands and Face"

At the 2018 National Patient Education Conference, we filmed Janet Poole, Ph.D., O.T.R./L., S.W.C., of the University of New Mexico, giving a presentation on Taking Care of Your Hands and Face:  The Importance of Stretches, Assistive Devices and Protection.  Watch the video on YouTube to learn stretching exercises to improve movement and function.

watch video  

2018 Chapter of the Year Rocky Mountain

Chapter of the Year: Rocky Mountain

The 2018 Chapter of the Year Award was presented to the Rocky Mountain Chapter serving Colorado.  The award recognizes overall excellence in advancing the mission of the Scleroderma Foundation, and the Rocky Mountain Chapter has marked significant growth in support, education, and research.  Congratulations!

scleroderma.org/colorado

 

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American College of Rheumatology Releases First-Ever Rheumatic Disease Report Card

New Report Examines Access, Affordability and Lifestyle Factors Affecting Rheumatic Disease Care in all 50 States and the District of Columbia

On September 4, the American College of Rheumatology (ACR) released the Rheumatic Disease Report Card: Raising the Grade on Rheumatology Care in America, a first-of-its-kind report that evaluates just how difficult it can be to live well with a rheumatic disease in the United States.

read more

 

Michigan Medicine

 

Research & Treatment Centers

University of Michigan 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 Ann Arbor, Michigan area, go to the University of Michigan Scleroderma Center.

NORD 35 Years Sharing Patient StoriesNORD Logo horizontal
 

Submit a Video Sharing Your Perspectives on Rare Disease Advocacy

What does rare disease advocacy mean to you? Share your perspectives as part of NORD's (National Organization for Rare Disorders) new video campaign, "35 Years and Growing: Personal Stories from the New Era of Patient-Focused Advocacy."  What motivates you as an advocate?  What advice would you give to someone new to advocacy?  Share! 

September 19 submission deadline.

learn more & contribute your story to the campaign

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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​

2018 October Michigan Webinar
 

Webinar:  "What in the World is New with Scleroderma?"

October 18, 2018; 7 - 9 p.m. Eastern

The scleroderma world is constantly evolving.  Are you curious about the latest happenings?  Join this webinar for a presentation by Daniel Furst, M.D., rheumatologist, and facilitator Nancy Stephens.  Open to individuals with scleroderma, caregivers, and family members.  

register for the webinar

Join Inspire!
 

"Looking for Advice, First Time Posting"

"Donna324" says, "This forum has been such a wonderful source of information for me.  I have been receiving the daily messages for over a year now, but have never posted."  Donna could use some advice now as her disease is progressing.  

join the conversation at Inspire.com

Stepping Out Logo 2018 Be Part of the Cure
 

Stepping Out Walks in September

September is upon us and fall will soon follow, but you can hold onto the last of vestige of summer by attending a Stepping Out to Cure Scleroderma walk or 5K run in Illinois, Missouri, Massachusetts, or Washington State. 

9/08 - Springfield, IL & St. Louis, MO
9/09 - Topsfield, MA
9/15 - Seattle, WA
9/16 - Westfield, MA
9/22 - Dixon, IL
9/30 - Boston, MA

sign up to walk today!

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Now Accepting Scleroderma Research Grant Applications

DEADLINE:  September 17, 2018

The Scleroderma Foundation's peer-reviewed grant program offers two distinct funding opportunities designed to foster the development of innovative and high quality research in fields related to scleroderma.  These are the New Investigator Grant and the Established Investigator Grant.  To apply or to learn more, follow the link below, or call 800-722-4673.  

research grant applications

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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