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Scleroderma Foundation
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eLetter #751 | Feruary 23, 2018  
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2018 Capitol Hill Day - April 16-18
APPLICATION DEADLINE 2/28

The deadline to apply to attend Capitol Hill Day 2018 is February 28

Included in the application form is a request for scholarship assistance. An application is required whether you’re applying for a scholarship or not. 

We need advocates from certain voting districts in California, Florida, Indiana, Kentucky, Louisiana, North Carolina, Oklahoma, Oregon, Tennessee, Vermont, Washington, and West Virginia.
Public Speaking Letter Writing

Grassroots Advocacy Webinar
"Using Your Voice to Meet with an Elected Official"
February 26, 2 p.m. ET

What does a scleroderma advocate do during Capitol Hill Day?  Join our webinar on February 26 at 2 p.m. Eastern time to find out! 

Sit in on a mock meeting that's just like the ones patient advocates have in the offices of Congress members. This small group of advocates will likely include a patient who had undergone stem cell therapy, a parent or caregiver of a child with scleroderma, a patient who uses a medical device and an advocate who works in a chapter. Excellent opportunity to see what the day is all about.

Join Feb. 26 WebinarDial 302-202-5900; 
Enter Conference ID 710-462-255

 2018 Conference Save the Date 180x270

2018 National Patient Education Conference - July 27-29, Philadelphia

REGISTER ONLINE for the 2018 National Patient Education Conference at scleroderma.org/conference.

If you prefer to register by mail,
download a registration form.

Hotel information is also online.  To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.

www.scleroderma.org/conference

conference scholarship

Apply for a Scholarship to Attend the National Patient Education Conference

Scholarships are available for individuals with scleroderma to help them attend the National Patient Education Conference. 

March 21 is the deadline for applications to arrive in the Foundation office.

www.scleroderma.org/scholarship

 Washington Evergreen Chapter Logo 2017

Support Groups

Support groups enable individuals with scleroderma to meet and exchange information with others who face similar problems.  Groups also host speakers on specific on a range of topics from time to time.  

There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented.  Each week this eLetter will highlight support groups associated with a particular chapter.  The Washington Evergreen Chapter (Washington State) hosts eight groups.

Support Groups in Washington State

Michigan March 2018 Webinar 

Scleroderma
& How it Affects Our Children
Webinar, March 14, 7-9 p.m. Eastern

Dustin Fleck, M.D., Pediatric Rheumatologist from Michigan Medicine will be leading this webinar for parents of juvenile scleroderma patients and providing educational information about the disease, medications and current treatments.  

 Rare Disease Day logo 2018

Rare Disease Day
Wednesday, February 28, 2018

Rare Disease Day takes place the last day of February each year. The main objective is to raise awareness about rare diseases and their impact on patients' lives. 1 in 20 people will live with a rare disease at some point in their life. There is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day encouraes researchers and decision makers to address the needs of those living with rare diseases.

www.rarediseaseday.org

 NORD logo stacked

Rare Disease Day Tweetchat
Wednesday, February 28, 2018; 1 - 2 p.m. EST

In celebration of Rare Disease Day 2018, NORD (National Organization of Rare Disorders) will moderate a tweetchat on the important topic "What To Do If You or Your Child Receive a Rare Disease Diagnosis" with co-hosts Boston Children's Hospital and The Mighty.

Use #RDD18Chat to join NORD, who will be live-tweeting from @RareDiseases with Marsha Lanes, MS, CGC, NORD’s Genetic Counselor & Medical Editor. Phillip L. Pearl, M.D., Director of Epilepsy and Clinical Neurophysiology at Boston Children’s Hospital and William G. Lennox, Chair and Professor of Neurology at Harvard Medical School, will be joining the chat from @BostonChildrens. Ashanthi De Silva, Rare Disease Editor for The Mighty, a digital health community created to empower and connect people facing health challenges and disabilities, will be joining from @TheMightySite.

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Coping with Chronic Illness

The MedlinePlus.gov website has compiled a list of articles and resources to help individuals who are affected by a chronic illness.  There are reference links to basic information, related issues, research, and resources, plus info for different age groups: children, teenagers, and seniors.

Read More

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FODMAP 101:
A Detailed Beginner's Guide

FODMAP stands for "Fermentable Oligo-, Di-, Mono-saccharides and Polyols." Learn what that really means and how to manage your food to avoid harful digestive issues byreading this online article at Healthline.com.

Read More

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Hydration Has a Major Effect on Energy Levels and Brain Function

The info-stream tells us to drink water, and there are lots of standards thrown about casually about how much water to drink.  Read this article on Healthline.com about hydration's impact on your energy and on your brain.  Follow the links in the article for supporting information.  

Read More

 Participant Center Video Tour

Your Stepping Out Participant Center has Great Fundraising Tools

Learn how to be a fundraising superhero at Stepping Out to Cure Scleroderma. This video shows the basics of the online Participant Center that helps you track your fundraising progress, enter offline donations, update your personal fundraising page, and recruit a team. 

Clinical Trial Update

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BRAVOS study logo

BRAVOS Study

Diffuse cutaneous systemic sclerosis (dcSSc) is an autoimmune disease also known as progressive scleroderma. The BRAVOS clinical trial is currently enrolling scleroderma patients to determine the safety and tolerability of brentuximab vedotin, a drug that is FDA-approved for the treatment of Hodgkin’s and other lymphomas.

The BRAVOS study is being conducted at research centers across the United States. You may be eligible to participate in the BRAVOS study if you:

  • Are 18 to 70 years old
  • Have been diagnosed with dcSSc
  • Have had dcSSc for 5 or fewer years
  • Are on ongoing immunosuppressive therapy with one of the following: methotrexate, mycophenolate mofetil or azathioprine
Learn more about the BRAVOS study on clinicaltrials.gov (NCT03222492) or the study website, www.bravos-study.org.

 
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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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