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eLetter #812 | May 3, 2019  

CARRA Eveline Wu


CARRA Study Shows Delay in Referrals to Pediatric Rheumatologist

A team of CARRA (Childhood Arthritis and Rheumatology Research Alliance) investigators led by member Eveline Wu, M.D., assistant professor of pediatrics at University of North Carolina, recently published a manuscript based on the analysis of data from patients with juvenile localized scleroderma (jLS) from the CARRA Legacy Registry.  The manuscript, entitled “Baseline Description of the Juvenile Localized Scleroderma Subgroup From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry,” has been published in the April 2019 Issue of the ACR Open Rheumatology.   Dr. Wu and her team found that children with jLS who do not have joint limitation are referred to pediatric rheumatologists later than patients with joint limitation. The authors note that a delay between jLS symptom onset and the first visit with a pediatric rheumatologist is not uncommon, which highlights the insidious nature of the disease and need to educate referring providers about the symptoms of localized scleroderma.

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Awareness 2019 Recruit


Share You Story

June is Scleroderma Awareness Month.  So few people know about scleroderma.  Let the world get to know your story and help us raise awareness.  

To build a compelling awareness campaign, the Scleroderma Foundation, in collaboration with Scleroderma Canada and the Scleroderma Research Foundation are working with our friends at Brogan Partners to find and tell the stories that best illustrate the impact of scleroderma on individuals and families.

Are you ready to share your story with the world?  Email scleroderma@brogan.com for details. 

2019 National Conference Chicago Design 3


The Sky's the Limit in Chicago
July 19-20-21, Chicago, Illinois

The National Patient Education Conference is in Chicago, Illinois this year, where the sky is the limit.  Get access to world renowned scleroderma experts, reunite with old friends, and connect with others who have scleroderma. 

Watch this brief video to get a glimpse of what conference is all about.  

Register today to take advantage of the early bird discount before it ends May 22. 

KGS2 Kids Get Scleroderma Too logo Conf 2019


Kids Get Scleroderma, Too!
Kids, Teens, & Parents Program at National Conference

Kids Get Scleroderma Too (KGS2) is offered as part of the Scleroderma Foundation's National Patient Education Conference, which takes place July 19-20-21, 2019 in Chicago, Illinois. KGS2 is an exceptional program for children and teens, ages 5 to 17, who have scleroderma, and for their siblings, or children with a parent who has scleroderma, and for other young people whose lives are impacted by the disease.

KGS2 is designed to help children and teens and their caregivers learn more about scleroderma in a fun environment that promotes making new connections. The entire weekend is filled with engaging, fun workshops and activities specific to their needs.

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Michigan Webinar 2019 May


Microbiome, and How it Affects Your Disease

  • Webinar, Thursday, May 9, 2019
  • 7 - 8:30 p.m. ET

What is the microbiome and how does it affect scleroderma?  Register for the Michigan Chapter's May webinar to learn about the topic from Narayanan Parameswaran, B.V.Sc., Ph.D., professor of Biomedical Physical Sciences at Michigan State University. When you register, you'll receive a confirmation email with additional instructions to join the webinar on the day of.

register today

PAR 2019 Meet The Experts


Meet the Experts: Taking Charge of Your Lung Health

American Thoracic Society, Public Advisory Roundtable 
13th Annual FREE Patient/Family Forum
Saturday, May 18, 2019, 10 a.m. - 2 p.m.
Hyatt Regency Hotel, Dallas, Texas

With Anne-Marie Russell, Ph.D., MSc.N., Daniel Croft, M.D., M.P.H., Narelle Cox, Ph.D., Kathleen Lindell, Ph.D., and Kelly Chin, M.D.

Welcome message delivered by Kerri Connolly, Chair of the ATS PAR and Scleroderma Foundation Director of Programs & Services.

Please RSVP by email to cwhite@thoracic.org no later than Wednesday, May 8, 2019. For more information, please contact Mr. Courtney L. White, (212) 315-8640.

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Jennifer Cropper Direct Mail 2019 II


Because You Give, They Have Tools to Thrive

Jennifer Cropper, a mother of two, needed help understanding the disease that was changing her body.  The Scleroderma Foundation's 2018 National Patient Education Conference helped Jennifer learn more about scleroderma and that she wasn't alone.  

"I met so many incredible people that I didn't have to explain myself to, they just got it.  That was an incredible feeling when this whole experience can be incredibly lonely at times," said Jennifer.

Please give a gift today to support the work and mission of the Scleroderma Foundation.

Lesley Saketkoo 2018 Conference Doctor of the Year


The Promise of Scleroderma Research

“I often hear, ‘This may not help me right now, but if I can help someone else in the future, I want to be part of it’.”

That's the promise of scleroderma research according to researcher, clinician, and educator Lesley Ann Saketkoo, M.D., M.P.H., of Tulane University School of Medicine. It’s people who have systemic sclerosis, who drive research through their eager participation in clinical trials.

Please give a gift today to support the work and mission of the Scleroderma Foundation.

Stepping Out Logo 2018 Be Part of the Cure - Web


Where are You Stepping Out?

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to advance the Scleroderma Foundation's three-fold mission of support, education, and research.

May 04:  Ventnor, NJ
May 18:  Columbia, MD, Westbrook, ME
May 19:  Sherman Oaks, CA

Find more walks at scleroderma.org/steppingout

 
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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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