Wednesday, November 27, 2013

Celebrating Life with the Breathe PHree Gala

As we conclude Awareness Month, PHA staffer Megan Mallory writes about a leader, a moment and the PH community...

Five and a half years ago, I joined PHA’s staff in the publications department, my primary responsibility being to put Pathlight together each quarter. About six months into my new position, a young woman named Katie Tobias contacted me about writing for the newsletter. Katie was 23 at the time. As with so many of our community members, Katie had a remarkable story to tell.

“I have always loved art: painting, drawing, you name it. Everyone knew me as the ‘creative one.’ … Then, in a heartbeat, everything changed. I found out I was in the ‘severe’ stage of PH and was ‘knocking on death’s door.’ When I first got out of the hospital, I lost everything, including my desire to do so much as pick up a pencil,” Katie wrote in her first Pathlight article, published in the spring of 2009.

Katie had a way with words, and lucky for us, she found her desire to pick up a pencil again. After that first article, she contributed several more pieces to the newsletter, even helping us to establish the Breath of Fresh Air column in Pathlight for Generation Hope, PHA’s community for PH patients in their teens, 20s and 30s. But then her health declined, and for more than a year, Katie was unable to contribute to Pathlight.

“At this moment, disease progression is inevitable. But this moment is all we have, so make the most of it. Allow yourself to feel the emotions but also know that no matter what life’s path has in store for you, there is ALWAYS a ray of hope illuminating every step,” Katie wrote in the winter 2011 issue of Pathlight just before taking the time she needed to devote to her health.

Katie (pictured left) and me at
the Breathe PHree Gala
That’s why this past Saturday, Nov. 23, was so special. Katie’s health has greatly improved, she has transitioned off IV medication, and she felt well enough to host the Breathe PHree Gala in Wilkes Barre, Pa., with more than 150 people in attendance. As PHA’s final special event of PH Awareness Month this November, I felt honored to represent PHA at this stellar event.

When I arrived at the hotel where the event took place, I walked into a banquet room filled with dinner tables, a spot for a DJ, a stage for a live band, and a table brimming with raffle items. It was quite an impressive site. And Katie was perfectly suited to the role of hostess for the evening. She greeted everyone as they arrived and introduced me to other patients in attendance. Shortly after dinner, she took the stage to explain to audience members what pulmonary hypertension means and why their attendance Saturday night was so important to the cause. She also acknowledged each patient in the room and dedicated the song “Keep Breathing” by Kerrie Roberts to, as she explained, “all PH patients – here and around the world – but also a very dear friend of mine, Jessa, who had her second lung transplant last night.”

Katie’s spirit is a perfect example of the hope that thrives in our community. We have countless stories of patients and their families facing this disease head on and inspiring others with their courage and determination. Katie’s event wraps up a month of these amazing stories, and we’ve been chronicling all of them on the PHA Daily Beat. I invite you to see what our amazing community has been up to this month.

And as we look ahead to 2014, the spirit of hope and determination just keeps growing. In June 2014, PHA will host its largest International PH Conference and Scientific Sessions to date, bringing together patients, caregivers and medical professionals from all over the globe to learn, share and connect.

I look forward to capturing all of this energy in the pages of Pathlight, and I’m excited to share that Katie’s first article in more than a year will be published this January. As she writes in her forthcoming article, “I am a PHighter. I am a Survivor. I am PHenomenal. We ALL are.” Be on the lookout for more from Katie and all of our amazing community members. And if you have stories to share, let us know! Contact me, Megan Mallory, at You are the energy that drives everything we do at PHA. Thank you for all that you do and for making November 2013 such an outstanding Awareness Month.

Wednesday, November 13, 2013

The Awareness Month marathon...

The Awareness Month marathon continues…

Last Thursday evening, I was at PHA’s first N.Y. Chapter Gala, which honored the memory of Dr. Robyn Barst.  That was followed on Friday, speaking to the patient session at the always great Duke/University of North Carolina PHSymposium.  On Saturday, I visited the windy north country of Rochester, Minn., for the Reach for the Stars Gala organized by Bonnie McGoon and her great team of volunteers.

With all that’s happening in our small but active community of PHers, I wasn’t the only one from PHA on the road.  Staff and Board members joined our community at the above events but also at our San Francisco Bay Area Chapter Gala on Friday and the Omaha 8th Annual Phenomenal Hope for a Cure Brunch & Auction (one of 8 events on Saturday (PHkids for a Cure 5K in Houston, 4th Annual Breathe Easy 5K in Albuquerque,  "Walk for a Breath" Sentara Heart PH Awareness Walk in Virginia Beach, VA, Jude's PHamily of PHaith 5K PHun Run in Denton, Texas, South Florida PH Fun Walk in Pompano Beach, Florida, and in Toronto Canada “Let Me Breathe” – A Vegas Night Fundraiser for PH)!

This Tuesday, we hosted PHA’s Annual Congressional Luncheon (and Congressional Office visits).  It was an important event with our leadership – patients, family members and medical professionals – making the case for the PH Research and DiagnosisAct of 2013 and the importance of government support for NIH research.

So why do we do these activities and events?  The answer for our Galas and Walks and other funding events is that PHA is not like government which is supported by our taxes or business which has a product to sell.  We do what we do for PH research and patient-serving programs based on the voluntary support we receive.    And then there are the education events – like the Duke UNC PH Symposium where we offer information and connect with our community and the Congressional Luncheon and lobby day where we make our case to decision makers on issues that are critical to our community’s future.

In the process, we also present new information and media and meet extraordinary people.  

Here's a new video we premiered at the New York Gala (thank you for helping to make this possible Actelion) and which two days later was already being used in Rochester, will be on the PHA website soon. 

Also, at the NY Gala, two patients performed heroically, Jennifer Lombardi was captain and choreographer of her dance team at Villanova when she was diagnosed with advanced PH in 2006.  She and her partner performed a salsa dance after which she spoke about her faith and finding her plan for the future. She was followed by Chloe Temtchine, the Grand Prize recipient of the 2011 AVON National Songwriting Competition who also performed at our Congressional luncheon 

There were many great speakers these events, including Joanne Sperando Schmidt , who spoke at both our NYC Gala and told the story of her own and her family member's PH at the NY Gala and the Congressional Luncheon, 11 year old Lucas Van Wormer who told his PH story at the San Francisco Gala and Juliet Skuldt who spoke about her family's PH journey with their daughter, Cordelia.

There's a lot more but I'm heading out to the Cleveland Clinic tomorrow for their annual PH Symposium on Friday and Saturday. If you're in the area, I hope to see you there.