Showing posts with label Race Across America. Show all posts
Showing posts with label Race Across America. Show all posts

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.

Monday, August 6, 2012

Surfing the blogs...

Blog information seems to flow like the waters. This afternoon, PHA's VP for Community Engagement, Mollie Katz, sent a note about a blog that focused on PHA's Research Room at Conference.

Med School Watercooler is a blog from the University of South Alabama's Medical School. Pulmonary Researchers Participate in Pulmonary Hypertension Association's International Conference is a well-told story of how one medical team participated in the Research Room at PHA's International Conference in June and the important work they did.

Reading that first blog got me to exploring...

Next, I found Team Phenomenal Hope's site and their blog about their Conference experience.  These are the great folks from the University of Pittsburgh who unveiled their plans to bike awareness of PH across America in 2014.  Besides their Conference story, Team PHenomenal Hope energized by PHA Conference offers a lot of great pictures.  By the way, I love the theme of their website, Team Phenomenal Hope...It's not just about the bike. It's not even about the race. It's bigger than that...

We look forward to working with Team Phenomenal Hope to make this a national PH awareness event when they Race Across America in two years.

A little bit of searching brought out a lot more discovery.

Sometimes, in our community, blog information flows from the sharing of life experiences.  That can happen with groups like Generation Hope and their blog for young adults living with PH.

It can also happen with individuals, as I found with blogs from Colleen S. and Colleen B.

Colleen S. lays her goal out in the subhead to her Daily Ponderings...the ramblings of a girl with Pulmonary Hypertension...sharing the ups and downs of this disease and anything else I want to share!

So does Colleen B. in her PH and "The New Normal"...finding a path with Pulmonary Hypertension.  Her profile explains why Colleen B. writes:

My PhotoI am a mom in my early 30s. I was diagnosed with Pulmonary Arterial Hypertension in January of 2008. This life changing disease has forced me to find a new perspective on things, to find a "new normal," and ultimately to decide what that new normal would look like. I don't believe in letting the disease define that for me. Chronicled here is the story of that still on-going journey.
 
Becca A. tells her story through My Life as a Chronically Ill Teen, defining her purpose clearly and powerfully...
This blog is about hope, love, acceptance, and life's ups and downs. Living with a chronic illness isn't easy, but with the written word, maybe we can bring some hope and kindness back into the world.
Sean Wyman's Blog, Sean Wyman--Future D.O...the thoughts and reflections of a graduate student chasing the dream of being a healer shares insights from his experiences, observations and, yes, trials. 

Kim's blog - The Life and Lungs of Kim is self-described as "the chronicle of a woman who was diagnosed 6 years ago with Pulmonary Hypertension..."
And then there's Pam G.'s Blog, Multi-tasking Wife's Life, in which a caregiver celebrates the joy of self-publishing in the blog world.


Blogs are a great way to talk about what you think is important (or just spin the day's events) in a way that you feel comfortable. They are easy to set up, too.  And, help is everywhere.  All you have to do is Google, how to blog.

To learn more about the value of blogging...or diary-keeping...or any other form of self-expression, you may want to watch an interactive workshop in PHA Classroom. Words for Wellbeing

It's based on the fact that medical research actually links creative endeavors, such as expressive writing, to reduced symptoms and improved health. You may want to invest 45 minutes to get ideas, prompts and tips regarding writing for your own health, as well as guidelines and considerations when writing for publications like Pathlight.

The session was presented by Sylvia Earley, volunteer copy editor for Pathlight, Megan Mallory, PHA's Publications Director and Jeannette Morrill, author of “Living with Pulmonary Hypertension: 34 Years and Counting…Healing the Mind and Body Through Faith.”

Also very much on target is a PHA webinar, Creativity and Healing through Blogging, featuring Leigh McGowan and Colleen Schnell and hosted by Megan Mallory.
My goal for this blog was to spotlight the fact that many in our community are finding satisfaction and personal value through writing.  It may be something you want to consider.

Expressing yourself can be the pathway to healing.

Oh...and if you know of any other blogs from the PH community, please feel free to post a note and let me know.  Thanks!