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Scleroderma Foundation
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eLetter #813 | May 10, 2019  

NeedyMeds


All You Need to Know About Scleroderma Lung Involvement

Webinar: June 18, 2019; 11:30 a.m. - 12:30 p.m. ET

Don't miss out as Scleroderma Foundation Medical and Scientific Advisory Board Member Aryeh Fischer, M.D., an Associate Professor at the University of Colorado School of Medicine, shares up-to-date and crucial information about this chronic condition affecting 300,000 Americans. This webinar covers need-to-know facts about scleroderma lung involvement, resources available to manage this diagnosis and the resources available from the Scleroderma Foundation that can help you on your journey towards health.

register today

2019 NIEHS Twin Study


Recently Diagnosed with a Rheumatic Disease?

To understand the genetic and environmental factors related to these illnesses, NIEHS (National Institute of Environmental Health Sciences) is seeking families in which an adult or child has been diagnosed within five years with Rheumatoid Arthritis/Juvenile Rheumatoid Arthritis, Systemic Lupus Erythematosus, Systemic Sclerosis or Dermatomyositis or Polymyositis. These families also need to have a twin or sibling of the same gender (who is within 5 years of age of the person with one of these diseases) and who does not have an autoimmune disease. Enrollment is at the Clinical Center or in a local doctor's office. The study includes a thorough evaluation and compensation is available.

For more information, read the flyer, or call (800) 411-1222, or visit clinicaltrials.gov.

breakfast


Food Choices and Scleroderma

Many people living with scleroderma perceive that what they eat influences their symptoms. If you are a person with scleroderma and you experience related gastrointestinal symptoms (bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation, etc.), you might be interested in participating in a national research study run by the New Orleans Scleroderma Patient Care and Research Center (Lesley Ann Saketkoo, M.D., M.P.H., Tulane University Lung Center) using telephone counseling and online questionnaires to assess the impact of various diets that might impact symptoms in scleroderma.

If you are interested in participating: email CTDresearch@tulane.edu with your name and telephone number. Dr. Saketkoo or Ms. Jensen will call and/or email you.

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.

learn more

Jennifer Cropper Direct Mail 2019 I


Because You Give,
They Have Tools to Thrive

Thanks to your generosity, Jennifer Cropper along with 52 other adults and children living with scleroderma were able to attend the Scleroderma Foundation’s National Patient Education Conference last year. Conference scholarships help individuals attend who may not otherwise be able to.

"Receiving that scholarship made the whole thing possible for me. I would not have been able to attend the conference at all without the scholarship."
--Jennifer Cropper

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

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Hope Raisers:
The Tournament of Non-Champions

Raising hope for individuals affected by scleroderma is as easy as playing golf.  For nine years, the Ciszon Family has hosted a golf tournament, dubbed the "Tournament of Non-Champions."  Over the history of the event they have raised more than $100,000 to fuel the Foundation's mission of support, education, and research in honor of their mother, who they lost a year ago. 

They do this on the Foundations' Hope Raisers webpage, which is a powerful online fundraising tool.  Forget GoFundMe and FirstGiving; use the Hope Raiser tool and 100 percent of the funds go to the Foundation.   

Be a Hope Raiser

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 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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