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.

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