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Mothers Day Card
In This Issue
SRF Webinar Series
My Mom's Special
Hero Wall
Services Match Patients With Clinical Trials
Your Voice Matters!
Actelion's Macitentan Pivotal Phase III SERAPHIN



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FOR THE SCLERODERMA COMMUNITY 

 

Dear ,

   

Scleroderma affects both men and women. However, female patients outnumber men four to one. Many patients are moms, grandmothers, sisters, co-workers and friends - all heroes. The SRF has created a special way to celebrate these important people in our lives this Mother's Day.  

 

With a gift of $20 or more, we can help honor the women who have made a difference in your life by sending a Mother's Day card with your personal message. Just (1) click the link below to make an online donation; (2) check the "in honor" or "in memory" box in the tribute section; (3) fill out the name and contact information for where you'd like us to send your card, and; (4) write your personal note in the comments field at the bottom. Send your card today.
Patient Education Webinar Series  

Dr. Fredrick Wigley Director, Scleroderma Center at Johns Hopkins

In the fourth of our continuing series, Dr. Fredrick Wigley of the Johns Hopkins Scleroderma Center focuses on how scleroderma affects our bodies - with specific emphasis on the vasculature, or blood vessels. His presentation explores the signature scleroderma symptom of Raynaud's Phenomenon and other vascular aspects of the disease; looking at signs, symptoms, treatments and other disease management tools. If you were not able to tune in for the live broadcast, view the recorded session: Scleroderma: A Complex Vascular Disease.  

 

All previous webinars are also available on the SRF Website.    

My Mom's Special - A Children's Book to Benefit the SRF
 

Cure Crew Member Meredith Allister and her daughter, scleroderma patient Andrea Oakland, are helping to raise scleroderma awareness -- one child at a time. My Mom's Special is a 25-page children's book, authored by Andrea, with illustrations by Meredith. It is written from a young girl's perspective about why her mom, a scleroderma patient, is different from others and gives specific examples of the impact scleroderma has on a family.

 

Deliveries of the self-published, soft-bound book will begin to ship this month!  

 

Pre-order this charming book now for just $20. Your entire contribution, less shipping fees, will be used to fund scleroderma research. The Foundation thanks Meredith, Andrea and their publishing sponsor for donating this book for others to enjoy.
Hero Wall      

Each person touched by scleroderma has a unique story to tell. We are grateful to everyone who is sharing pictures and captions on our expanding Hero Wall. This virtual tribute to patients and their loved ones is quickly growing. If you haven't already, submit your image today.   

  

To become a part of our Hero Wall, just click here to email a photo and be sure to include a caption of 20 words or less.  

Services Match Patients With Clinical Trials

A growing number of patient-advocacy groups are playing matchmaker, linking patients to researchers who need them for clinical trials.

The move comes as a persistent shortage of volunteers has slowed trials of new treatments for cancer and other diseases, which typically involve a patient receiving a drug or a placebo. People, including healthy volunteers, also are urgently needed for studies to contribute to the overall understanding of diseases including Parkinson's and Alzheimer's, experts say. Read more... 
Speak up! Your Voice Matters.
  

We want to hear what you have to say. The Scleroderma Research Foundation is pleased to introduce our series of monthly polls and surveys that will help the SRF provide the information you need. Each month will feature a new topic and give you an opportunity to share your thoughts.

 

This month's topic: Clinical Trials Survey Button 

Clinical trials are one of the most important components to bring new therapies to market. We'd like to help you find more information about trials that can help you and others living with scleroderma. You don't have to be a scleroderma patient to participate in a trial. Tell us what you think and take our brief survey. Results as well as a new topic will be featured in next month's newsletter.

 PAH - Actelion's Phase III SERAPHIN Outcome Study Meets Primary Endpoint


The initial analysis of Actelion's macitentan, a novel dual endothelin receptor antagonist that resulted from a tailored drug discovery process, has met its primary endpoint in a pivotal, long term, event-driven SERAPHIN Phase III trial. SERAPHIN (Study with an Endothelin Receptor Antagonist in Pulmonary arterial Hypertension to Improve cliNical outcome) was the largest randomized, controlled study in pulmonary arterial hypertension patients with a long-term treatment, designed to evaluate the efficacy and safety of macitentan, which includes a clearly defined morbidity/mortality primary end-point.

Macitentan potentially has several characteristics of major benefits, including increased in vivo preclinical efficacy, as compared with existing ERAs, which resulted from sustained receptor binding and tissue penetration properties, whilst a clinical pharmacology program demonstrated that macitentan has a low propensity for drug-to-drug interactions. Read more... 


Visit the Patient News section of our site for more articles like this.  

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