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Scleroderma Foundation
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eLetter #671 | August 12, 2016  

Help Us Make a Difference!  Your Voice is Needed In Washington

Capitol Hill Day - September 12-14, 2016

Deadline to apply is August 24

capitol hill 2013.JPGOn Tuesday, September 13, members of the Scleroderma Foundation will participate in the 2016 Capitol Hill Day in Washington, DC and your voice is needed to help carry our message!

As we meet with Congressional leaders in the United States Senate and House of Representatives, we need people living with scleroderma and their caregivers to share their personal stories to help advance understanding of scleroderma and promote greater federal research funding.


EVERYONE’S VOICE COUNTS and ALL ARE WELCOME TO PARTICIATE!


Any person whose life has been impacted by scleroderma is welcome to participate in the Capitol Hill Day activities.


SEEKING PARTICIPANTS FROM KEY CONGRESSIONAL DISTRICTS AND STATES


Members of Congress from certain Congressional districts and states sit on committees that oversee the “Scleroderma Research and Awareness Act.” We are looking for participants from these key districts and states. Follow the Web link below to find out if you are from one of them!
Even if you’re not from one of the key districts and states, your voice is important, so please consider participating!


SCHOLARSHIPS ARE AVAILABLE – APPLICATION DEADLINE IS WEDNESDAY, AUGUST 24, 2016. 


A limited number of partial and full scholarships are available to cover travel and hotel costs. Please see the Web link below for scholarship information and the application.


FOLLOW THE LINK FOR MORE INFORMATION

Click here to learn more about Capitol Hill Day, how you can participate, and what the day entails >>


ACT NOW!  We need to hear from you by Wednesday, August 24.

If you are interested in participating, please email David Murad at DMurad@scleroderma.org, or call the Scleroderma Foundation at 800- 722-HOPE.


Swimmer Overcomes Chronic Disease to Become an Olympian

14SWIMMINGweb-master768 (1).jpgKathleen Baker stared at the seemingly simple question on the form distributed to members of the United States Olympic swim team. What challenges did she have to overcome on her way to qualifying for the Rio de Janeiro Games?  How does one begin to explain the physical and psychosocial challenges of living with a disease.

Read the entire NY Times article here >>

What is Cupping?  Here's What You Need to Know

cupping-olympics.jpgEveryone’s talking about cupping, a therapy that some Olympic athletes competing in Rio have been partaking of. It caught people’s attention this week because the therapy often leaves round marks that look like bruises on the skin, but it’s certainly not new. The practice has been used in ancient Chinese medicine for thousands of years as a way to treat pain, muscle stiffness and even respiratory issues.

Click here for more >>

Research Study Opportunity on The Role of Environmental Factors in Scleroderma

If you are a patient with systemic scleroderma (systemic sclerosis), you are being asked to participate in a research study on the role of environmental factors in Scleroderma. Environmental factors are suspected to play a role in the development of Scleroderma. This is a research project being conducted by the Medical University of South Carolina (MUSC). 

You can only participate in this survey if you are a patient with Scleroderma. Your participation in this research study is voluntary.

The study involves filling an online survey that will take approximately 15 minutes. Your responses will be confidential. The survey questions will be about the type of your disease, your first symptom, the address(es) you live/lived at, and your occupation(s) when you developed your first symptom or prior to developing your first symptom. We will also collect identifying information such as your name, age, gender, race, date of birth, current mailing address, and e-mail address. We will review public records on air and soil quality for your address to determine if there may be common environmental factors associated with Scleroderma.

We will keep your information confidential. To help protect your privacy, your survey answers  will be coded and will be stored securely such that only the members of the research team will have access to your identifying information.

If you have any questions about the research study, please contact Dr. Carol Feghali-Bostwick or Dr. Celine Ward at 843-972-8944 or at wardce@musc.edu. This research has been reviewed and approved by the MUSC Institutional Review Board for research involving human subjects.

We appreciate your participation in this survey. Please complete the survey once only. Click on the link below to begin. If you are unable to open the survey using the link, please copy and paste the URL into your browser. Once you begin the survey, you will need to complete it as the information will not be saved.


 
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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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