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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
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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
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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
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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
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STUDY PARTICIPATION OPPORTUNITY |
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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
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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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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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