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!

Awareness Month Voices from the PH Community (#2)...

As we begin Awareness Month, I'm posting this video from Shari Caffrey who speaks in her own words about why she founded Taylor's Wish (registration for the 2013 event is not yet open) for PH awareness and support of PHA programs.



This is number 2 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too.

Awareness Month Voices from the PH Community (#1)...

As promised on my earlier Awareness Month blog, I'll be posting stories of inspiration and awarenss throughout Awareness Month.

Here's a note from a PHA member in Pennsylvania, Merle Reeseman.  Can one person make a difference?  It's the only way a difference can be made.

 

I just received a call from an aide to State Representative Carolyn Dykema stating that she is in the process of having November named Pulmonary Hypertension Awareness Month in the Commonwealth of Massachusetts.  They have contacted the office of the Governor and just keeping me up dated.

My brother and sister-in-law visited just over a week ago and my sister-in-law attended the Health Expo that Representative Stevenson puts on each year and I have a "table".  That was also the day he presentented me with the proclamation from the Commonwealth of Pennsylvania about November being named PH Awareness Month in PA... My brother asked for a copy of it and made an appointment with Rep Dykema. :D

I had a very nice conversation with the aide and Rep Dykema will also speak to the Congressperson and ask for co-sponsorship for HR 1810 (my brother is also working on that).

Just had to share the news.  Another "WELL, HOLD ME BACK"

Merle

And that's how awareness grows...

PHA hosts over 20 message boards and lists servs.  Many support the work of various committees, while others are active sources of broad communications for various segments of our community.

Lately, there's been a lot of buzz on the support group list servs about two pieces of video involving support group leaders.

Ellen Harris, a support group leader from Northern Virginia, is featured on a PH segment on the PBS show, Healthy Bodies, Healthy Minds (scroll down to episode 1506).  North Carolina support group leader Doug Taylor reported that WTVI in Charlotte, NC also had a recent program on PAH. (Once on the page use the arrow at the bottom to scroll down to the Pulmonary Hypertension show). Host Joey Popp interviewed cardiologist Theodore Frank, MD, and pulmonologist Doug Kelling, MD as well as local PH patients (and twins) Linda Miles and Brenda McCallum.

Then there's the continuing coverage of the Kilimanjaro Climb which has generated over two million readers and viewers across more than 70 articles and features.  I'm sure you'll enjoy one of the most recent from WQED in Pittsburgh.

While the PH community may not be large compared to other diseases, our drive to get our story out is creating awareness and opportunities beyond our numbers.

I hope you'll take a moment to find ways to get involved through the Awareness pages on the PHA website. It can make all the difference.