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Scleroderma Foundation
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eLetter #757 | April 6, 2018  
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Meet the Experts
"Living Well and Lung Health"

Saturday, May 19, 2018; 10 a.m. to 2 p.m.
San Diego, California

The American Thoracic Society (ATS) Public Advisory Roundtable (PAR) invites you to its 12th annual FREE patient/family forum May 19 in San Diego.  This year's talks focus on living well and lung health, and the panel includes Xavier Soler, M.D., Ph.D., Gene Kallenberg, M.D., Francesca Polverino, M.D., Ph.D., Bernie Sunwoo, M.B.B.S., Jeremy Orr, M.D., and Juan Wisnivesky, Dr.P.H., M.D.  Scleroderma experts Lesley Ann Saketkoo, M.D., M.P.H., and Kristen Highland, M.D. are present and available for Q&A in breakout rooms.  The Scleroderma Foundation's Kerri Connolly is the current Chair of the ATS PAR and is chairing the event.

RSVP by email to cwhite@thoracic.org no later than Wednesday, May 9, 2018
Questions: Mr. Courtney L. White (212) 315-8640

read more

 RAN Rare Action Network

RARE Action Network™ Events
Advocates Invited to Connect and Learn
at Workshops & Luncheons

Join an upcoming Rare Action Network™ (RAN) event. These free meetings give you the opportunity to connect, learn, and share with other rare disease advocates while advancing rare disease policies at the state level.  Together, we can make a difference for people with rare diseases.

If you have questions about RAN events, please contact Kristen Angell, (203) 744-0100.


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Are You Going to Philly?

The National Patient Education Conference is a remarkable experience where people with scleroderma can connect with each other and learn from one another and from scleroderma experts.  

REGISTER ONLINE for the 2018 National Patient Education Conference, July 27-29, in Philadelphia:  scleroderma.org/conference.

If you prefer to mail your registration, download a PDF registration form and send in a hard copy

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.

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Taylor Brown was Ten Years Old

Taylor Brown was diagnosed with "en coup de sabre" at age ten.  She had been experiencing symptoms since age two, but no one could tell her mother, TaMetress Reed, why they were happening.  When she finally received a diagnosis, she still needed help understanding how to communicate about her symptoms. 

Fortunately, the generous donors of the Scleroderma Foundation had provided funds to give scholarships to families like Taylor and TaMatress who would benefit greatly from attending the Foundation's National Patient Education Conference. 

Scleroderma changes lives, but a donation to fund a  conference scholarship can help people affected by scleroderma to chart a new, productive course in life.

Donate today to the conference scholarship fund

 Stepping Out Inside  SF tile

FUNdraising for Stepping Out to Cure Scleroderma

Fundraising can be fun!  Hosting a costume party can be a great excuse to raise money for Stepping Out to Cure Scleroderma and have a good time doing it.  Some folks like to invite their friends to a movie night at their house.  The price of admission...donate to end scleroderma.  And, for the musically inclined, there's Karaoke night.  The ideas are endless and the fun can be too.  

Stepping Out to Cure Scleroderma

 Join Inspire!

What Would You Like to Talk About Today?

The Scleroderma Foundation's online community at Inspire.com has surpassed 40,000 members!  That's an impressive number and it means the chances are good that no matter what's on your mind regarding your scleroderma, someone else on Inspire.com is thinking the same thing.  Maybe you should talk to them.

join the conversation

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Support Groups of Texas

Support groups enable individuals with scleroderma to connect and exchange information with others who face similar problems.  Groups also host expert speakers 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, we highlight support groups associated with a particular chapter.  The Texas Bluebonnet Chapter hosts nine groups.

Support groups in Texas

STUDY PARTICIPATION OPPORTUNITY
 SCOPE study

SCOPE Study
Scleral Lenses in Current
Ophthalmic Practice Evaluation

Do you have dry eye? Share your experiences with dry eye. The SCOPE study group has designed a study to learn more about your experiences with dry eye.  They would like to know about your symptoms related to dry eye, past and current treatments and experiences with contact lenses.  If you have questions about the SCOPE Study, please contact Ellen Shorter at eshorter@uic.edu.

complete the survey

CLINICAL TRIAL UPDATE
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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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Diamond
National Sponsor
Actelion JSN 2018


 

Corporate Sponsors
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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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