Pathlight Summer 2016 - (Page 37)

ADVANCING THE CAUSE LANTOS HIGHLIGHT Lantos Awards Make a Dif f erence Around the World By Keiron Mohamed, Program Manager, Patient and Caregiver Services T he Pulmonary Hypertension Association (PHA) presents the Tom Lantos Innovation in Community Service Awards annually to offer support, education and advocacy services to those affected by pulmonary hypertension (PH). In 2015 PHA received more than thirty applications and awarded 12 grants. While we may be well aware of the pioneering work that takes place in communities across the U.S. to raise awareness and provide support to patients and family members, it is less often that we hear about the work being done outside the 50 states. Join us on a spin around the world as we spotlight interesting work being done in China, Ukraine, Hungary and Puerto Rico. CHINA: Many in China were unaware of the prevalence of PH and the challenges it poses, and adequate resources to diagnose and treat patients have not been available. Huan Huang from Beijing, China, recognized this need and developed a strategy to communicate about PH with the local government and media outlets. Thanks to the Lantos grant, PH groups throughout China were able to build a network of PH support groups, launch a training program to empower regional PH support groups and, in Shenzhen (one of China's largest cities), increase local access to treatment. UKRAINE: PH activist Oksana Kulish saw that there was a great void in the availability of resources for Ukrainian patients. Over the span of several months she rolled out a three-phase campaign in the city of Lviv, Ukraine. Oksana was able to establish a hotline service for patients with PH, virtually connecting everyone in Ukraine. With the funding, informational brochures were developed and printed, and advertisements appeared on billboards and city lights throughout the main streets of Lviv. Additionally, a press release was posted on the City Council web page and aired on local media, and a one-day conference led by a PH-treating physician was held. The initial effort in Lviv has sparked a movement that will better serve future PH generations in Ukraine to come. HUNGARY: In small countries throughout the world, it is very difficult to bring together PH patients, which is why Eszter Csabuda decided to apply for a Lantos grant. Csabuda recognized that support groups and conferences are vital and offer a comfortable space where PH patients can meet and interact with fellow patients who live with PH. Imagine having to travel more than one hundred miles just to see another patient! Thanks to the efforts of Eszter and other volunteers, PH patients and caregivers were able to gather in Budapest and attend lectures by experts in PH, meet other patients for the first time, and raise awareness by posting this event through social media channels. This rare opportunity led to life-long friendships that otherwise would not have been possible. PUERTO RICO: The island of Puerto Rico benefited from two Lantos grants in 2015. Due to its tropical climate, the weather in Puerto Rico can change from clear skies and sunshine to a sudden downpour, and Mineliz Colon used funds to create an awareness campaign by advertising on umbrella bags and umbrella stands. The goal was to increase awareness among both patients and medical professionals. The Puerto Rican PH Foundation is using the funds to coordinate campaigns to educate health professionals, inform patients about their benefits and any assistance available, and form PH patient support groups around the island. Many of these projects and others like them would have remained a distant dream without funding from a Lantos community service award. The late Representative Tom Lantos' granddaughter, Charity Sunshine, was diagnosed with PH in 2004 and Congressman Lantos became a longtime advocate in the fight against PH. He once said, "Nothing I do compares to my compassion and commitment to PH." With the help of Gilead Sciences, we continue to honor the legacy of Tom Lantos through the Tom Lantos Innovation in Community Service Awards. These awards are given out every April and can provide up to $5,000 towards community support. The application process for 2017 opens in November, but it's not too soon to learn more about how to apply and start thinking about how you can help PH patients in your community or country. Learn more Go to or email for more information. WWW.PHASSOCIATION.ORG G64178_Pathlight_Su16.indd 37 37 6/20/16 2:36 PM http://WWW.PHASSOCIATION.ORG

Table of Contents for the Digital Edition of Pathlight Summer 2016

Message from the Chair
Message from the SLC Chair
Quick Takes
PHenomenal Lives
Family PHocus
A Day in the Life of a PH Physician
Research Corner
GO PHAR Research
Ask the Expert: Post-PE Monitoring
End-of-Life Conversations: Tough Questions & Important Answers
Lantos Highlight
Conference & Leadership Changes
Chapter News
Advocacy PHact or PHiction? Test Your Knowledge of PH Advocacy
Calendar of Events
Question of the Quarter:

Pathlight Summer 2016