Scleroderma Foundation eLetter
eLetter #399
Scleroderma Foundation Logo

Greetings!  

Actelion Athletes to Swim, Bike and Run for the Scleroderma Foundation

 

Alcatraz logoOn June 5, a group of 24 athletes from Actelion Pharmaceuticals will swim, bike and run in support of the Scleroderma Foundation at the Escape from Alcatraz triathlon in San Francisco.

 

These athletes, dubbed Actelion Athletes, are raising awareness of pulmonary arterial hypertension (PAH), sometimes also known as pulmonary hypertension (PH), which is a lung condition that can affect up to 60 percent of people with scleroderma. 

 

"Our team has been touched over the years by people living with scleroderma who so bravely battle not only the primary disease, but other conditions that can accompany it like PAH," said Ernie Ross, senior director, Market Access, and an Actelion Athlete. "It is truly an honor to dedicate this race to these individuals who inspire us and through our participation, we hope to bring greater attention to finding cures for the scleroderma spectrum of diseases and PAH." 

 

The Actelion Athletes group was formed three years ago by three co-workers who were training and competing in a triathlon; it quickly grew into a company-wide program. Over the years, the Actelion Athletes have competed in six triathlons, including two half Ironman races. In the last half ironman, not only did everyone finish the race but one team even made the top 10! 

 

This year's group of athletes is gearing up to Escape from Alcatraz. The triathlon consists of a 1.5-mile swim from Alcatraz Island in the San Francisco Bay, an 18-mile bike ride and an 8-mile run. The 24 athletes have divided into the following teams of three and each person on the team is responsible for either swimming, biking or running:

  • Humuhumunukunukuapua'a
  • The Tri Hards
  • Placebo Effect
  • ActeliAthletes
  • The Fast Jumping Jalapenos
  • Ro-Ho-Do
  • Salty, Windblown and Sweaty
  • Boom Vapor Gold  

In the coming weeks, we'll introduce you to some of the Actelion Athletes - and learn a little more about them and their teams. As the athletes train hard for the race, please share your words of inspiration for them on our Twitter or Facebook pages. Choose your favorite team name and cheer them on to victory, let them know how much their support means to you! 

More Conference Workshops Announced 

Additional workshops for the annual National Patient Education Conference in San Francisco July 8-10 have been announced.

Lorinda Chung imageLorinda Chung, M.D., M.S.
, is an Assistant Professor of Medicine (Immunology and Rheumatology) and Dermatology at Stanford University School of Medicine. She is the Director of the Scleroderma Center and Co-Director of the Multi-disciplinary Rheumatologic Dermatology Clinic with Dr. David Fiorentino. Dr. Chung is actively involved in clinical, translational and epidemiologic research on systemic sclerosis and related connective tissue diseases. She is the principal investigator for multiple clinical trials of new potential therapies for scleroderma patients. Dr. Chung will present a workshop on Raynaud Phenomenon and Digital Ulcers. She will review currently available and investigational therapies for these conditions.


Lynn Cryer imageLynn Schmidt-Cryer, R.N., B.A., is a Certified Case Manager at Petaluma Valley Hospital in Petaluma, Calif. During her nursing career, Lynn has worked both in the community and hospital setting assisting patients and their families with the continuum of care. She has had extensive training and experience in ethical issues and end-of-life planning. Lynn enjoys the opportunity to share that knowledge and support with people as they face their own journey with quality of life and medical decision planning for themselves and loved ones. She will present the workshop: "Goals of Care for Quality of Life, Medical Decision Planning." Participants will learn about end-of-life choices, review important/or legal documents that need to be in place to help insure personal wishes are followed, and the resources available to assist in the process.  


Don't delay, register today for the National Patient Education Conference. Early bird registration deadline is Tuesday, June 21.

Amira Working on New Scleroderma Drug

Phase 2 Study to Begin in Early 2012 

Amira LogoAmira Pharmaceuticals, Inc. announced on May 2 initial positive data from a Phase 1 clinical study of AM152, the company's oral selective antagonist of the LPA1 receptor. Completion of this study positions Amira to initiate a Phase 2a study in patients suffering from systemic sclerosis, a systemic fibrotic disease, by early 2012.  

 

Read the rest of the press release from Amira.

NIH to Examine the Future of the Biomedical Research Workforce 

NIH News logoA new working group at the National Institutes of Health will examine the future of the biomedical research workforce in the United States. The group will recommend actions to the Advisory Committee to the Director to ensure a diverse and sustainable biomedical and behavioral research workforce. The working group will consider questions such as:   

  • What is the right size of the workforce?
  • What are the appropriate types of positions that should be supported to allow people to have successful careers and to continue to advance biomedical and behavioral sciences?
  • What is the best way to support these various positions?
  • What types of training should be provided?
Find out more in the full press release from NIH.

Barrett's Esophagus & Scleroderma Study

Rheumatology May 2011 CoverBarrett's Esophagus is the major risk factor for esophageal adenocarcinoma. Scleroderma (SSc) is associated with an increased risk of Barrett's Esophagus-related to chronic reflux. The aim of this study is to determine the outcomes of Barrett's Esophagus and estimate the esophageal adenocarcinoma risk in scleroderma patients over a three-year prospective study.

Read the full study results now in Rheumatology.
2011 National
Gold Sponsor
Actelion Pharmaceuticals, 2010 National Gold Sponsor

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