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eLetter #814 | May 17, 2019  

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Apply to Attend Capitol Hill Day 

September 16-18, 2019, Washington, D.C.

The Scleroderma Foundation’s Advocacy program provides you with the opportunity to meet policy makers on Capitol Hill to educate them and to generate awareness about scleroderma-related issues that are important for continued scientific research.  Of critical importance in 2019 is our drive to have scleroderma re-listed as an approved condition eligible for research funding through the Department of Defense’s Peer-Reviewed Medical Research Program.

Apply today to attend Capitol Hill Day and represent the scleroderma community.  Scholarships are available to offset travel and accommodations costs. 

learn more and download application

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

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis

Often, persons with scleroderma do not know other people with the disease and may live in a state where there is no chapter of the Scleroderma Foundation or in a community where there are no support groups available. This web based self-management program was designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself. Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms, and strategies to advocate for yourself. Peer Mentors from the program will empower you to take control of your life and your healthcare.

www.selfmanagescleroderma.com

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Dinesh Khanna, M.D., M.Sc.


Results of Controlled Trial Evaluating Internet-Based Self-Management in Systemic Sclerosis

Read the results of a study conducted to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in people who have systemic sclerosis (SSc). The study recruited patients from the University of Michigan and the Medical University of South Carolina, and was conducted by a large team led by Dinesh Khanna, M.D., M.Sc., with input from Laura Dyas, Robert Riggs, and Kerri Connolly of the Scleroderma Foundation, and Janet. L. Poole, Ph.D., O.T.R./L., F.A.O.T.A.

read the full study

2019 National Conference Chicago Design 3


May 22 Deadline for Early Discount
National Patient Education Conference
July 19-20-21, Chicago, Illinois

Register before May 22 to qualify for the substantial savings of the early bird discount.  Become or renew your Foundation membership for an even deeper discount. 

Hotel information is provided upon conference registration.  A non-refundable charge of one-night stay, plus tax, is required to reserve a hotel room.  The group rate is $199 plus tax per night.  

The Sky's the Limit in Chicago for the National Patient Education Conference.  Get access to world renowned scleroderma experts, connect with old friends, and make new friends as you learn about scleroderma. 

Watch a brief video about conference  

Register today 

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

Greg Marion Board SF


Reach for the Cure

“My mom has been battling scleroderma for 16 years. Her positive outlook on life is a guiding inspiration in mine.” Greg Marion, National Board of Directors.

The need is great. 
The time is now. 
The choice is yours.

Please give as generously as you can to reach for the cure.

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
June 01:  Boardman, OH, Rochester, NY, San Antonio, TX

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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