Scleroderma Foundation eLetter
eLetter #403
Scleroderma Foundation Logo

Greetings!  

SPACE IS RUNNING OUT!

Secure Your Room at the Hilton Union Square 

 

Conf_Book Online NowButtonThere are only a few rooms left at the Hilton Union Square. So, if you want to stay near all of the conference action - don't delay and make your room reservation today!

 

If you can't get a room at the Hilton Union Square, don't worry! Here are some other hotel options that are near the conference location and in a similar price range:  

Also, remember to register for the National Patient Education Conference before June 21 to take advantage of our early bird pricing! Register now online!

 

Girl WebJuvenile Program Announced 

 

We have worked with medical professionals at Children's Hospital Los Angeles to put together an excellent series of workshops and discussions about juvenile scleroderma. These programs are designed for parents, families and young scleroderma patients.

 

Scleroderma patient Samantha Murray and her family also will lead a workshop at the conference. Samantha will host an ice cream social and games for youth patients in attendance.

 

Find out more about the juvenile program during the National Patient Education Conference July 8-10 in San Francisco.   

Help Spread the Word in June
We Hope IconJune is Scleroderma Awareness Month and you can help spread the word. As an advocate for the Scleroderma Foundation, you can raise awareness and teach others about this debilitating disease.

 

Team up with our 23 chapters and more than 145 support groups as we tell the world about scleroderma throughout the month.

 

There are many ways you can help: share your story, wear some teal-colored clothing, attend a "Stepping Out to Cure Scleroderma" walk-a-thon or give a gift to help find the cure.

 

Visit our website to learn more about Scleroderma Awareness Month and to find ways that you can make a difference!  

Cheer on Actelion Athletes

Escape from Alcatraz Tri

This Sunday, Actelion Full Color LogoJune 5, 25 Actelion Athletes, along with 2,000 others, will take part in the Escape from Alcatraz triathlon.  Throughout the past few weeks, we've introduced you to a few of the men and women (click here, here or here for their profiles) who will be dedicating every stroke, pedal and step they take to the Scleroderma Foundation and patients who suffer from this debilitating disease and its associated diseases, like pulmonary arterial hypertension (PAH).Alcatraz logo   

The Escape from Alcatraz triathlon follows a beautiful but challenging course. Beginning at the infamous Alcatraz Island, the race begins with a 1.5-mile swim across the frigid San Francisco Bay. The athletes then transition to the 18-mile biking portion of the race and make their way down Marina Blvd. before winding through Golden Gate Park and finish the race with an 8-mile run along the beach and in the shadow of the Golden Gate Bridge. (View the course map now.)  

If you are in the San Francisco area on the day of the race, we encourage you to cheer on these athletes from several different spots. From Marina Green, spectators can watch the swimmers from when they take the plunge into the Bay until they mount their bikes. From Marina Blvd., it is possible to watch both the bikers' and the runners' routes. The big finish can be viewed from the grandstands lining the finishing chute.  

However, you don't have to be in San Francisco to cheer on the athletes through our Twitter or Facebook page. Post a note of encouragement to the group as a whole or any of the individual teams:

  • Humuhumunukunukuapua'a
  • The Tri Hards
  • Placebo Effect
  • ActeliAthletes
  • The Fast Jumping Jalapenos
  • Ro-Ho-Do
  • Salty, Windblown and Sweaty
  • Boom Vapor Gold
Pulmonary Hypertension Webinar - Wednesday, June 8

PHA LogoBarbara Smithson, M.S.N., R.N., the Reaseach Nurse Coordinator at Rhode Island Hospital will discuss scleroderma during a webinar at 1 p.m. Wednesday, June 8.

 

This program will focus on the elements that are necessary for allied health professionals to diagnose and treat patients.  She will discuss the various levels of the disease and how the progression affects patients.  Also discussed in this webinar will be the importance of various testing methods to verify the extent of the disease and the importance of screening all scleroderma patients for Pulmonary Hypertension.

 

The webinar is designed for health care professionals. Nursing professionals can receive 1.0 hour of Nursing CEU upon completion.

 

Visit the Pulmonary Hypertension Association's website to register

2011 National
Gold Sponsor
Actelion Pharmaceuticals, 2010 National Gold Sponsor

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