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!

From Orlando to Istanbul…

At PHA’s 2012 International PH Conference and Scientific Sessions in Orlando, Fla., one of our medical speakers during the Scientific Sessions was Dr. Ghazwan Butrous, a Professor of Cardiopulmonary Sciences at the University of Kent in the United Kingdom. His presentation on schistosomiasis, an infection (caused by parasitic worms in contaminated water) that is a primary cause of pulmonary hypertension in South America, Asia and Africa, is now available on PHA Online University and is well worth watching.

We have known Dr. Butrous since, as a scientist at Pfizer, he played a critical role in demonstrating the value of sildenafil for treatment of pulmonary hypertension. Today, he plays another important role as Managing Director of the Pulmonary Vascular Research Institute (PVRI), an organization of physicians with whom PHA has been developing an increasing number of partnerships.

Grand Bazaar

There are many connections between PHA and PVRI, and at the end of 2012 I got a call from Drs. Stuart Rich and John Newman. Dr. Rich is a past member of PHA’s Scientific Leadership Council (SLC) and co-founder of PVRI, and Dr. Newman is immediate past chair of PHA’s SLC and active in PVRI. They invited me to attend PVRI’s annual meeting in Istanbul to address the group on what patients want from medical research and to discuss a potential clinical trials initiative.

When I heard the question – what do patients want from medical research, I was really pleased. Here were Dr. Rich and Dr. Newman, researchers who played important roles in building this field, asking a question we had rarely heard before.

Hagia Sophia

I accepted and began developed a survey. Once it was ready and posted online, Kim Lamon-Loperfido, who manages PHA’s Patient Outreach and Services, circulated a single Facebook message to let our community know it was available. Twelve hours later I checked to see if anyone was interested. To my astonishment, 143 people had already completed the survey … and within 72 hours we had met our goal of 250 respondents. This was no small statement of interest since we estimated completion would take 35 to 45 minutes. 

Michael Gray and Briana Rivas-Morello in our Medical Services program volunteered to analyze the data and developed a detailed report and slide deck which I was able to present on Tuesday, Jan. 22, in Istanbul to the almost 200 physicians and researchers from around the globe who attended.

Topkapi Palace

The presentation was part of a symposium on the possible development of a global clinical trials consortium. Besides my presentation from the perspective of patient advocacy groups, Drs. Rich and Newman chaired sessions that included perspectives from academia, industry and government.

PHA’s presentation was well received, and we have already received considerable interest in more information from many who attended. Our next step will be to share the information with PHA’s Scientific Leadership Council so that one or more researchers can be encouraged to expand and refine it for publication. At that point, we look forward to sharing the information with those who participated in the survey, the rest of our PH community and researchers in other fields who are finding this topic of growing interest.

One thing that is already crystal clear from the survey is that patients want more information than they are getting from the research in which they are participating – and those who are not participating could be encouraged to do so with more information.

Dr. Al- Hazmi bringing the
Sometimes It's PH Campaign
zebra stripes to Istanbul

At PHA we will begin working on this and, as our information is reviewed and further developed, you will be hearing more about it.

I cannot write this without saying that Istanbul – with its long and historic blending of East and West – was a perfect place to host this global meeting. The meeting was hosted by the Saudi Association for Pulmonary Hypertension and at an evening event, I pointed out to Dr. Manal Al-Hazmi from Riyadh, Saudi Arabia, that her blouse looked like zebra stripes. She replied, “Of course, that’s why I chose it … to support the early diagnosis campaign and bring awareness to Istanbul!”

There is no question that we are all in this fight together.