Let's Work Together to Advance the PH Cause

Over the next several weeks, I have invited PHA staff to offer guest blog posts about the work they are doing on behalf of the PH community. This first guest post in the series comes from Kim Lamon-Loperfido, PHA’s Patient & Caregiver Services Manager. Kim coordinates the Tom Lantos Innovation in Community Service Awards, and since its launch six years ago, the program has held true to the goals of supporting good ideas that can make a difference to the PH community. The Lantos Grants help patients and family members bring those ideas to reality for the betterment of all​.

Carmen Lozada-Bruno (right) received a
Lantos grant to distribute Spanish language
posters in Puerto Rico with information on
symptoms, diagnosis and the causes of PH.

I’m looking forward to another successful year with the Tom Lantos Innovation in Community Service Awards program this spring. This program allows members of the PH Community to fund and bring into reality their ideas. Last year we had 25 applicants and 13 funded projects.

Some fabulous projects came from 2014 like Brittany Evans, who along with the Generation Hope advisory board, created notepads printed with PHA’s most important web links for both patients and healthcare professionals. Her first distribution of this project took place at one of the healthcare professional meetings at PHA’s 2014 International PH Conference. Another project by Carmen Lozada-Bruno of Puerto Rico involved distributing Spanish language posters with information on symptoms, diagnosis and the cause of PH across Puerto Rico’s pharmacies, emergency rooms, hospitals and government offices. She received nothing but gratitude and positive feedback throughout the process.

I have had conversations with several community members who have experienced the spark of inspiration, but aren’t quite sure how to turn that spark into a full project for their application. Through these conversations, we have explored the primary goal they are trying to work toward, and from there, we’ve filled in details on how they can reach that goal. I’ve encouraged them and I encourage you to watch our helpful webinar on the process, which takes you from brainstorm to application and, finally, to successful project implementation. But I’m also here to help through any part of the process, and I can connect you with previous winners who are more than happy to mentor you in the process.

This program is now in its sixth year of funding projects to advance our shared cause. It provides grants of up to $5,000 each, and both domestic and international applications are welcome.

Projects over the past five years have raised awareness of PH, created PH resources, and educated others about PH. Those wishing to apply for funding should know their projects can also replicate the efforts from previous Lantos Awards, for example introducing a project to a new audience or adding a new component.

The grant program is named for the late Rep. Tom Lantos, a longtime congressman from California who was the original sponsor of our bill in Congress after his granddaughter was diagnosed with PH.

For more information or for help with your application, please reach out to Lantos@PHAssociation.org. I am so excited to work with you as you turn that spark of inspiration into a full-blown project to advance the PH cause. Although applications are due by March 25, 2015 – let’s chat today!

Steve Van Wormer's path of pediatric PH...6 years later

The following guest blog was written by Steve Van Wormer on the anniversary of his son's diagnosis with PH. Thank yoiu Steve, Lucas and Marina for all you do and for being models for so many in our community...

My PH Past:

Today marks the six-year anniversary of my son Lucas’ Pulmonary Hypertension diagnosis.  On October 28, 2006 he was only four years old when he underwent an array of cardiac testing and my wife Marina and I first heard the words, “Pulmonary Hypertension.”  As any PH parent, patient or caregiver can attest to, it’s a day one never forgets and a diagnosis that changes everything.  Lucas did have about a year of declining health and energy, but in hindsight, we consider ourselves lucky and blessed that his diagnosis was made earlier than most in our community.  What I remember most about that day, after shedding some tears of course, was making the decision to not curl up in a ball but to become a champion for our only child.

 

My PHA Present:

In January through May of this year, thanks to receiving a Tom Lantos Innovation in Community Service Award, I created a series of five Public Service Videos for PHA, with the hope of building PH Awareness.  These videos seem to be resonating not only within our community, but in the media as well.  They have generated news stories on TV & in print and have become a fixture on YouTube and facebook and at PHA events.  They’ve even played on flat screen TVs inside port-o-potties at PHA’s Woodland Crawfish Festival fundraiser… true story!

 

One of those spots, which can be found here, is a call to action to support the Robyn Barst Pediatric Research Fund, voiced by none other than Lucas himself.  As a parent, I couldn’t be prouder of his contribution to PHA.  As a member of PHA’s Board of Trustees, I couldn’t be more thankful to former board chair, Carl Hicks, who was instrumental in taking the Barst fund over its $1,000,000 goal at a recent fundraiser, triggering PHA’s first ever pediatric specific research initiative.   

 

Earlier this month, to coincide with PH Awareness Month, my creative partners and I were asked to translate some of these PSA spots into Chinese and Spanish to reach patients and medical professionals across the globe in China, Spain, Mexico and South America.  I’m so thankful that, six years after Lucas’ diagnosis, PH Awareness continues to spread across the world.

 

My PHA Future:

I’m very happy to announce another PH Project that launched a few days ago on Thanksgiving: a PHA Podcast, dedicated to raising PH Awareness.   “Empowered by Hope – The PHA Podcast” will bring dynamic stories and journeys from PH patients, caregivers and medical professionals in a series of impactful, insightful and, most importantly, hopeful conversations with members of the Pulmonary Hypertension Community.  Three episodes were released last week.  They are a series of conversations with our “Kitchen Table” Co-Founders Pat & Jerry Paton, Judy and Ed Simpson, and Dorothy Olson.  I’m sure you will enjoy listening and learning all about how our organization was formed.  A facebook page was also created (search: Empowered by Hope: The Pulmonary Hypertension Association Podcast).  I hope you can take a moment to “like” it and join in on the conversation.  I’m spending today’s six-year anniversary of Lucas’ PH diagnosis at UCLA with Lucas’ PH doctor (Dr. Juan Alejos), recording a new episode, with many more to follow.

 

In one of the podcasts, which you can subscribe to and download here, PHA Co-Founder, Judy Simpson told me what it means to be a PH Caregiver.  She said, “You do things you never thought you could do.”   Truer words have never been spoken. 

 

So many things have happened on our PHA journey over the past six years… so many things I never thought I could do. 

 

Did I ever think I would travel to Washington D.C. to visit Congressional and Senate offices to solicit support for our PH Healthcare Bill?  No.

 

Did I ever believe I would serve on a planning committee for an international Conference for 1500 patients, caregivers and medical professionals?  Certainly not.

 

Did I ever suppose I would create videos and podcasts that would be shown across the globe from Burbank to Barcelona to Beijing?   Never.

 

But I did.  And I do.  And I will continue.  In honor of my son, Lucas.  On behalf of pediatric patients like Iain, Katie Grace, Parker and Maddie, who need more research and treatment options sooner than later.  In memory of pediatric patients like Rayni, Taylor, Meaghan and Molly - who may have lost their PH battle, but will never be forgotten.