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2015 Award Winners

PHA’s history is the story of inspired people with the drive to turn ideas into reality. For the sixth consecutive year, Gilead Sciences is funding the Tom Lantos Innovation in Community Service Awards to keep that spirit thriving. Lantos Grants provide individuals with funding of up to $5,000 each to act on original ideas to advance the pulmonary hypertension cause. The following projects have been funded in 2015.

Give a Chance on Life for People with PH, by Oxana Kulish, Lviv, Ukraine. Oxana shares, "The main goal of this project is to overcome existing informational barriers in early diagnosis, prevention and treatment of pulmonary hypertension (PH) by implementing an information campaign in the Ukraine." The project will include billboards, social media campaigns and flash mobs to get the word out about PH.

Our Story: PH Awareness in the African American Community, by Venita Welcome, Somerset, New Jersey. PH patient and support group leader Venita Welcome will work with community members, faith-based organizations and PHA to create culturally sensitive materials to increase awareness of PH in the African American community.

Capacity Building for Regional Support Group Leaders, by Huan Huang, Beijing, China. Huang shares the grant will be used to build communication channels among regional governments, media and PH groups in China. Additionally, the funding will help to raise awareness and encourage more PH patient involvement in advocacy and awareness. Finally, the grant will provide regional training for PH group leaders throughout China in the hopes of pushing forward patient protections and equal access to treatments.

Lips Painted Blue App, by Sean Wyman, California. Sean hopes to build on the success of his popular pediatric awareness raising and educational cartoon video series Lips Painted Blue (a 2012 Lantos Grant). His plans include the potential for sharing the cartoon in more languages as well as adding games and interactive elements for pediatric patients.

Informing and Increasing the Quality of Life of Hungarian PH Patients, Budapest, Hungary. As a result of growing demand for reliable information, PHA Hungary will be hosting regional educational and networking sessions for patients. It is their hope these sessions will be useful in providing patients and caregivers with useful information for daily life.

The Book of Pongo: The Rare Purple Elephant, by Ioanna Alissandratou, Greece. The Hellenic Pulmonary Hypertension (HPH) Association has created a mascot, Pongo, the rare purple elephant. Pongo is the hero of a fairy-tale about his life. The concept is that Pongo was born with small nostrils making it difficult for him to breathe. This difficulty gave him his purple color. Nevertheless, Pongo manages to overcome his difficulties and give a message of hope. The HPH takes Pongo to interactive educational programs at schools in Athens.

Yoga for PH, by Patricia Fantuz, Detroit, Michigan. Due to the incredible success of this 2013 Lantos Grant, Patricia hopes to be able to distribute additional copies of Yoga for PH to members of the PH community. Yoga is a low-impact exercise that has been demonstrated to be effective in improving join pain, dyspnea and quality of life in patients with chronic disease.

We are PHamily by Melissa Dumitru, Darch, Western Australia. The goal of this project is to adapt, design and produce Australian-specific information and resources. The team will use the resources to further educate the medical society to ensure awareness of current diagnostic and treatment avenues. Also, the team wants to ensure patients are educated and aware of the latest information about the disease, treatment options, treatment centers and avenues of support currently available in Western Australia.

Boricuas PH Patient Special Education Day, Dorado, Puerto Rico. The Puerto Rican PH Foundation will host the first Hispanoamerican PH Symposium this year. This will be a three day PH Symposium to benefit the Hispanoamerican PH community. The symposium will include the participation of medical experts to provide current PH information, the participation of other experts to provide tips for patients' daily activities, and workshops and exchange of learning experiences that focus on advocacy and PH awareness for the community.

PH Awareness Under the Rain, by Mineliz Colon, Carolina, Puerto Rico. Puerto Rico is a tropical island where the weather changes almost every moment. It is common to find umbrella bags everywhere to prevent floors from becoming wet and slippery from dripping umbrellas. Mineliz would like to have umbrella bags placed in hospitals and doctor's offices and utilize them as an awareness raising item. The bags will share a printed message of PH symptoms and websites to learn more information.

HPAQUI Tune-Up, by Martha Gonzalez, North Bergen, New Jersey. This project will involve implementing an online sophisticated chat room with capabilities in Spanish and Portuguese to the website HPAQUI.com (Pulmonary Hypertension Here - a 2013 Lantos Grant Winner). The team hopes to be able to make video conferencing available as well.

PHriends Forever - Stronger Together, by Billie and Brooke Keith, Mason City, Iowa. This project will also involve Jayna Wall and Mitzi LaBarge. Billie, Jayna and Mitzi are administrators for the PH Facebook group, Families of Children with Pulmonary Hypertension. The team will put together pediatric hospital care packages to be sent to pediatric PH patients around the world to offer support through personalized items and PH education materials. Parents will request care packages for their child before or during a hospitalization. Care packages will be age specific and may include crayons, playing cards, word-finds, etc. Families of children living with PH often travel great distances to receive necessary, specialized care. Care packages will offer encouragement.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.