2013 Award Winners

PHA congratulates those below who have been awarded funding to implement their innovative approaches to awareness-raising and developing new and creative services for the PH community. We are grateful to everyone who submitted a proposal to the Tom Lantos Innovation in Community Service Awards program and to Gilead Sciences for making this program possible.

We look forward to the unique contribution each of the following projects will make to the lives of PH patients.

Restorative Yoga DVD by Patricia Fantuz, Detroit, Mich. Patricia Fantuz, pulmonary hypertension nurse coordinator at Henry Ford Hospital in Detroit, will provide PH patients access to medically sound, low-impact yoga exercises they can do conveniently at home. Working with physicians and other professionals at the hospital, she will produce a DVD demonstrating exercises that improve balance, endurance, muscle strength and flexibility.

Beats Per Mimi by Britt McNiff, Arlington, Mass. Britt, mother of 5-year-old Mimi, a PH patient, will use zebra artwork to increase awareness of pediatric PH among pediatricians and parents in Boston and western Massachusetts. The project will produce zebra-themed paintings to be hung on the walls of pediatricians’ offices. Each painting will come with an information card about PH.

The Scoop on PH by Jayna Wall, Burlington, N.C. Jayna’s project will promote the Sometimes it’s PH early diagnosis campaign by partnering with a local ice cream shop to sell a special purple ice cream flavor dedicated to PH. At one event, the PH message will also be communicated on souvenir bowls and ice cream scoops imprinted with “The Scoop on PH.” At a second event, the zebra emblem of Sometimes it’s PH will appear on magnets, temporary tattoos and coloring sheets. Read more

Just Breathe Tees and Phenomenal Hope Posters by Haley Lynn, Amarillo, Texas. Having struggled to get through high school, even gym class, with her PH, Haley, a young adult and Generation Hope member, will raise awareness about teen PH among high school students and their school administrators while encouraging youth activism on PH. She will speak in high school classrooms, hang PH posters in school hallways and recognize young people who get involved in fighting PH with “Just Breathe” T-shirts she has designed and printed. She is pictured left, wearing her T-shirt. Read more

Hipertensión Pulmonar Aquí (HPAquí) — Sin Fronteras/Hipertensão Pulmonar Aqui (HPAqui) — Sem Fronteiras by Martha Gonzalez, North Bergen, N.J. As a native of Ecuador and the mother of a child with PH, Martha saw a need for more extensive information for Spanish- and Portuguese-speaking PH patients in their native languages in the U.S. and abroad. She will develop a website whose name translates to Pulmonary Hypertension Here — Without Borders. It will connect patients to other patients and direct them to the PH organizations in their countries and to content in their languages, including on PHA’s website.

Faculty of Pulmonary Hypertension by Natalia Maeva, Bulgaria. This project promotes PH education among newly diagnosed patients, encouraging them to take responsibility for adhering to their treatment plans. Working with groups of Bulgarian health professionals and the Bulgarian Society of Patients with PH, this project will hold seminars for patients in four cities.

Climb for PHClimbing for PH by Huang Huan, Beijing, China. This project, implemented on World PH Day May 4–5, used a celebrity endorsement and an activity popular with Chinese office workers — a stair climbing contest — to increase awareness of PH  in China. More than 30 workers wearing PH T-shirts climbed 14 floors in the competition. Also, a news conference drew 200 people and resulted in 10 stories in the Chinese media.

Digital PSAs, International Versions by Steve Van Wormer, Burbank, Calif. Steve, a member of PHA’s Board of Trustees, is creating foreign language versions of the popular 60-second public service announcement (PSA), or “zebra video,” about the Sometimes it’s PH campaign, which was created through an earlier Lantos grant. The PSAs will be given to international PH patient organizations. See the PSAs: www.PHAssociation.org/GlobalPSAs

Hope Hot Holders by Bonnie Patricelli and Ryan Juntii, Clementon, N.J. Extending the reach of their Lantos project from 2012, Bonnie and her adult son Ryan, who has PH, will again imprint a PH awareness message on “hot holders,” the sleeves that prevent coffee cups from burning fingers. This year they will distribute them to healthcare professionals in cafeterias in medical teaching hospitals and universities.

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NORD

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.