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Scleroderma Foundation
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eLetter #852 | February 14, 2020  

Blue Heart Valentines Day

 

Happy Valentine's Day!

Systemic sclerosis can affect your heart and cause dangerous symptoms.  These conditions require careful evaluation by a physician. So, on Valentine's Day, remember to be good to your heart! 

Learn more about cardiac involvement and heart disease in scleroderma by watching a presentation given by Benjamin H. Freed, M.D., Assistant Professor of Medicine, Nortwestern Medicine, that was recorded during the 2019 National Patient Education Conference.

VIDEO

 support group stock photo

 

New Miami Bilingual Support Group

Are you interested in joining a bilingual scleroderma support group? We have recognized the need for a Spanish speaking support group in the Miami area and are happy to announce the first meeting on February 21, 2020. The meeting will take place at South Miami Hospital, 6250 Sunset Drive, Miami, Florida. Spanish will be spoken during the first half of the meeting, from 1 to 2 p.m. The second half of the meeting, from 2 to 3 p.m., will be held in English.

Join us in a fun and friendly environment where those affected by scleroderma can speak freely and confidently with their peers. For more information about this support group and future meetings, please contact support group leader Monica Ramirez at (786) 300-1242 or via email at miamiradgroup@gmail.com.

¿Está interesado en unirse a un grupo bilingüe de apoyo para la esclerodermia? Hemos reconocido la necesidad de un grupo de apoyo en español en el área de Miami y nos complace anunciar que la primera reunión tendrá lugar el 21 de Febrero de 2020 en South Miami Hospital, 6250 Sunset Drive, Miami, Florida. La reunión estará en español de 1 a 2 p.m. y una segunda reunión se llevará en inglés de 2 a 3 p.m.

Únase en un ambiente divertido y amigable donde los afectados por la esclerodermia puedan hablar libremente y con confianza con sus compañeros. Contactar al líder del grupo Monica Ramirez si tienen preguntas. Correo electrónico: miamiradgroup@gmail.com y Telefono: (786) 300-1242.

 survey clip

 

Patient Satisfaction Questionnaire

You are invited to participate in a survey that is IRB (institutional review board) approved. The results may help to enhance the patient experience and involvement in drug development in the future. It involves completing a short, anonymous survey about participating in clinical trials. Study results and summary will be provided to the Foundation upon completion, in addition to being presented for peer-review publishing in a pharmaceutical field journal. This research is not sponsored by any pharmaceutical company and no pharmaceutical company will have access to any raw data.

SURVEY

Rare Disease Day 2020 third largest country 

 

Rare is Many

February 29 is Rare Disease Day. You can increase awareness and understanding of rare diseases, including scleroderma, by sharing these messages on your social media accounts.

  • 300 million people live with a rare disease worldwide
  • Over 6,000 different rare diseases
  • 72% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood

Visit the Rare Disease Day website to download social media graphics, including a Facebook Frame and Twibbon.

RARE DISEASE DAY

Ticket to Work - WISE 2018 

 

Choosing a Service Provider That's Right for You

WISE Webinar: Wed., Feb. 26, 3-4:30 p.m. ET

How can a Ticket to Work service provider help you reach your work goals? Find out during this month’s WISE (Work Incentives Seminar Event) webinar. Choose Work will talk about the free services and supports available to eligible people with disabilities and share how you can connect with a service provider that’s right for you. Click the link below for more information and to join us.

WEBINAR

2020 National Conference E-Alert

 

Apply for a Conference Scholarship!

March 18 is the deadline for conference scholarship applications to be received in the Foundation's national office. Detailed instructions are included on the form, which is available on the National Conference website.

The National Patient Education Conference takes place in Bellevue, Washington, July 17-19, 2020.

Join others with scleroderma who are "Climbing Toward a Cure!" Learn from the top scleroderma experts in the world. Connect with others who have scleroderma. Talk with researchers in person.

SCHOLARSHIP

 TOSS scleroderma self management

 

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease because of distance or other limitations. Taking Charge of Systemic Sclerosis (TOSS) is a web-based self-management program 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). Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

Stepping Out Logo 2018 Be Part of the Cure

 

Be Part of the Cure!

You can become part of the cure by raising money at a Stepping Out to Cure Scleroderma walk or 5K run. Stepping Out is a rallying point for family, friends and coworkers to generate funding for the Foundation's mission: support, education, and research.

Several new dates have been added to the calendar!

STEPPING OUT

More than Scleroderma Boehringer Ingelheim

More than Scleroderma Boehringer Ingelheim Jovana

 

More Than Scleroderma

A series of 12 scleroderma education programs are being offered in different locations around the country from February through April by one of the Scleroderma Foundation's partners, Boehringer Ingelheim.  These programs are free and open to individuals affected by scleroderma and their family and friends.  The Foundation is not managing registration and is not responsible for the content.  When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

To learn more and to register, call (855) 415-7492.

  • 2/19 - Boca Raton, Florida
  • 2/22 - Costa Mesa, California
  • 2/27 - Edina, Minnesota
  • 2/29 - Los Angeles, California
  • 2/29 - Peachtree City, Georgia
  • 2/29 - Phoenix, Arizona
  • 3/10 - New Orleans, Louisiana
  • 3/28 - North Charleston, South Carolina
  • 4/02 - St. Louis, Missouri
  • 4/18 - Denver, Colorado
  • 4/22 - Clackamas, Oregon
  • 4/28 - Mt. Laurel Township, New Jersey

Clinical Trial Opportunities

Belimumab and Rituximab Combination Therapy

Overview

  • This is a randomized, placebo-controlled trial, where patients will be randomized in a 2-to-1 fashion to treatment with rituximab 1000 mg every other week for two infusions followed by weekly belimumab (200 mg subcutaneously) or placebo infusions followed by weekly subcutaneous placebo injections
  • All patients will receive background mycophenolate mofetil
  • Study duration: 15 months

Inclusion Criteria

  • Age: 18-80 years
  • Classification of systemic sclerosis (SSc), as defined using the 2013 American College of Rheumatology/European Union League Against Rheumatism classification of SSc
  • Diffuse skin involvement
  • Disease duration of less than or equal to 3 years as defined by the date of onset of the first non-Raynaud’s symptom
  • A modified Rodnan Skin Score (mRSS) of > 14

HSS Hospital for Special Surgery logoExclusion Criteria

  • Prior use of B-cell depleting therapies
  • FVC < 45%
  • DLCO < 30%

CONTACT

Hospital for Special Surgery:

Liza Morales, Research Coordinator
(212) 774-2561, moralesli@hss.edu

Beemnet Amdemicael, Research Assistant
(212) 774-2048, amdemicaelb@hss.edu

 

 
 
 
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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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