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eLetter #776 | August 24, 2018  
Messenger of Hope 2018 Grace and Pamela Pour

Messengers of Hope: 
Grace & Pamela Pour

Pamela and Grace Pour of Northville, Michigan, were honored by the Scleroderma Foundation with the highly regarded Messenger of Hope Award at its 2018 National Patient Education Conference in Philadelphia on July 28.  The award recognizes the mother and daughter for their impressive efforts to increase awareness of and to educate health professionals and the public about juvenile scleroderma.  Between 2017 and 2018, Grace and Pamela addressed nearly 900 medical students at 7 institutions.  Thank you Grace and Pamela!

read more at scleroderma.org/conference

 

Johns Hopkins Scleroderma Center

 

Research & Treatment Centers

Johns Hopkins University School of Medicine,
Johns Hopkins 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 Baltimore, go to the Johns Hopkins University School of Medicine, Johns Hopkins 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

Spirometry Test
 

Spirometry Testing Survey

A new survey on spirometry testing seeks feedback from both adults and children who have had this test.  (Spirometry is a breathing test that measures the amount of air in your lungs and how quickly you can breathe out.)  The anonymous survey takes about five to ten minutes to complete and is available until September 21.  It was developed by the American Thoracic Society (ATS) in parternship with the European Respiratory Society (ERS) and the European Lung Foundation (ELF).  

take the survey

2018_KGS2_logo_WEB
 

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​

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myPHteam.com

Living with pulmonary hypertension means battling a long list of symptoms and for some that includes scleroderma.

Join the social network for people llving with PH on myPHteam

Stepping Out Logo 2018 Be Part of the Cure
 

Stepping Out Walks in August and September

On this last weekend in August, Indiana and Ohio offer Stepping Out to Cure Scleroderma walks and 5K runs.  In September, there are seven more fundraising walks in Illinois, Missouri, Massachusetts, and Washington State. 

August 25 - Highland, IN & Cleveland, OH
September 8 - Springfield, IL & St. Louis, MO
September 9 - Topsfield, MA
September 15 - Seattle, WA
September 16 - Westfield, MA
September 22 - Dixon, IL
September 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

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

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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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