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eLetter #779 | September 14, 2018  

2018 Conference Video YouTube Espanol

 

 

Conference Video: "Esclerodermia: Conceptos fundamentales para entender la enfermedad"

At the 2018 National Patient Education Conference we filmed Fabian Mendoza, M.D., of Thomas Jefferson University presenting a Spanish language workshop on scleroderma fundamentals to help Spanish-speaking individuals with scleroderma and their families understand and manage the disease and its complications.

Revisaremos la causa de la enfermedad, características clínicas de la enfermedad temprana (y tardía) y estrategias de tratamiento.

watch this video & others from the 2018 conference

2018 National Advocate

Outstanding National Advocates

The 2018 Outstanding National Advocate Award recognized Dee Burlile and Shelley Van Pelt whose passion and commitment for advocacy have had a significant impact on the entire organization.  Motivated by their own strength and determined self-advocacy, Dee and Shelley created and facilitated an online grassroots training series designed to help people tell their own scleroderma story into an effective way to ask elected officials to cosponsor our House and Senate bills.  Being so open and vulnerable about the realities of what this disease does to patients, caregivers, and families has given the strength and resources for others to do the same.  Both are members of the Foundation’s Advocacy Committee and both are actively involved in advocacy efforts at the local, state, and national levels.  While advocacy can be a hot button word in a polarized political climate, these two women have taught us that being a self-advocate is an empowering way to fight back against a disease that can take away so much.  Congratulations Dee and Shelley!

scleroderma.org/conference

ATS Emergency Preparedness

 

Emergency Preparedness & Water Damage Recovery Issues

The American Thoracic Society published two separate pamphlets to assist people with lung diseases and other illness to prepare for a natural disaster or fire, and to recover from water damage from flooding.  

disaster preparedness - mold concerns

 

Mayo Clinic Logo

 

Research & Treatment Centers

Mayo Clinic Rheumatology

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 Minnesota go to the Mayo Clinic Rheumatology Department in Rochester, Minn. 

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

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​

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!
 

"Newly Diagnosed, Need Support"

Inspire.com hosts an online scleroderma community of more than 40,000 individuals.  People often post questions about going through a diagnosis and having unexplained symptoms.  Sometimes all they need is support.  Other times, they want real information.  Both of which you can offer based on your personal experience.  An individual using the screen name "BigAlanisFan" posted recently about being newly diagnosed and needing support.  Read BigAlanisFan's post and feel free to reach out. 

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. 

9/15 - Seattle, WA
9/16 - Westfield, MA
9/22 - Dixon, IL
9/30 - Boston, MA

sign up to walk today!

Discover Understand Overcome square
 

Scleroderma Research Grant Deadline is September 17

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

PHARMACEUTICAL INDUSTRY NEWS

Fibrocell-Science-Inc-logo.gif
 

F.D.A. Grants Fast Track Designation to FCX-013

Fibrocell issued a press release on September 5, 2018, announcing that the U.S. Food and Drug Administration has granted Fast Track Designation to FCX-013, the company's clinical stage candidate for the treatment of moderate to severe localed scleroderma.   

read the complete press release

 
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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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