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.

watch this video & others from the 2018 conference

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

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

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. 

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​

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​

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

"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 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!

Scleroderma Research Grant Deadline is September 17

research grant applications

CLINICAL TRIAL PARTICIPATION

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:

read more on ClinicalTrials.gov

PHARMACEUTICAL INDUSTRY NEWS

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