Wednesday, March 19, 2014

Be Brave... and Take a Simple Action

The first time I heard Chloe Temtchine sing was on Nov. 12, 2013. It was at the inaugural O2 breathe Gala, hosted by PHA’s Greater New York and Philadelphia Chapter. The performance was quite impressive. Chloe’s talents are great and so is her spirit, and now she is asking all of us to take a simple action to further the PH cause. I’d like to tell you how you can help.

Diagnosed in March 2013 with a rare form of pulmonary hypertension (pulmonary vascular occlusive disease, PVOD), Chloe almost immediately began fighting back. She uses her great performing skills to help fight for awareness, and she also uses her humor. As she introduces her band, she also introduces her necktie-wearing oxygen tank as Steve Martin.

Now Chloe is turning her amazing song of inspiration, “Be Brave,” into an opportunity for PH awareness.

For the past several weeks, she has been talking on camera to some very special patients and family members, including Anna Volino and Anne Sperando, about what it means to be brave. Their stories are powerful.

Working together, PHA and Chloe and her husband Marvin are taking action to increase PH awareness.

On March 29, we are asking that EVERYONE go to the iTunes store and download “Be Brave.” The cost is 99 cents, half of which will go to PHA. But the reason to take this action is much, much more important. When many downloads happen in a short period of time, iTunes gives the song and the performer much more visibility… and that visibility will translate to press and awareness.

So mark your calendar to download “Be Brave” by Chloe Temtchine on Saturday, March 29. Tell your family, tell your friends.  It’s a great song and, with your help, one that will make a difference!

Wednesday, March 5, 2014

Is Dr. Farber really skiing down four Mount Everests for PHA?

Well sort of… and he needs your help!

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Dr. Hap Farber is a force of nature… and he is getting ready to use that force to raise funds and awareness for PHA, as one of many Race of Our Lives events to support Team PHenomenal Hope. He will be skiing 100,000 vertical feet in one day… add it all together and that’s almost four times the height of Mount Everest! You can learn more about his ski challenge on his FirstGiving page.

I first met Hap in 1999. Shortly after I started at PHA, I staffed an exhibit at the American Thoracic Society conference. Unlike today, when PH sessions can draw more than 1,000 attendees, there were only two sessions for PH that year. One drew 35 medical professionals, the other 50. In my three days of staffing the exhibit, only about a dozen physicians stopped by. (Of course, we only had PHA pencils and a quickly put together fact sheet to hand out!) Hap was one of those physicians. His interest in what we were doing when very few knew about us was really appreciated and a great encouragement.

Since 2003, I have seen him present at Dr. Nick Hill’s annual Updates in Pulmonary Hypertension at Tufts University in Boston, at most of PHA’s International PH Conferences and PH Professional Network Symposia and many other medical meetings. His voluntary teaching is an important asset to building a community that can and is making a difference.

Around 2008, PHA had a much underused message board for members of our PH Clinicians and Researchers (PHCR) membership group. Then, a doctor asked for advice on a very complex case. World leaders in the field jumped in to create an extraordinary discussion, and Hap said, “We should do this regularly.” It was a great idea… with a lot of potential for a new workload. Sure enough, Hap was invited to prepare a monthly case for discussion and has been doing so ever since. It has become an important asset to PH medical education for almost 800 physicians working in the field.

From all of that, I knew Hap was a very smart guy and a strong leader in the medical field, but until recently, I had no idea of his skills in endurance racing. His bio in Wikipedia tells us that from cycling to marathons (with a lot in between), Hap is a remarkable athlete, having completed more than 45 marathons, as well as bicycling events and triathlons.  

Like Hap, PH community members across the country are jumping in to show support of Team PHenomenal Hope’s upcoming race and to raise funds and awareness of PH. So far, patients, family members, medical professionals, pharmaceutical industry representatives and others have committed to 50 events and activities in more than 30 states! The goal is to have at least one in every state before Team PHenomenal Hope’s Race Across America. 

These events and activities includ PHA National Support Group Coordinator and PH patient Josh Griffis’ PH Peddler effort where he is peddling 3,000 miles on a stationary bike, to simulate the distance Team PHenomenal Hope is riding in the Race Across America.

Today the spotlight is on Hap Farber, but there are so many extraordinary people involved in this effort, people like Josh, Kathleen Richardson, Diane Ramirez and Janet Mabe, Colleen Brunetti, Alex Flipse... and, if you can, YOU!

I encourage you to look at all the events posted so far and consider what you can do. If you are unable to do your own event, please consider supporting one of the heroes who are building awareness and support for better todays and tomorrows.

If you want to support Hap, I know he will be grateful. So will Josh and the others.