2012 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.

J. Paul Adams
Unionville, Ontario, Canada
Paul, the uncle of a Canadian PH patient, wrote and recorded a music video inspired by his niece’s experience with PH. His Lantos project, “Let Me Breathe – The Whole World Will Be Listening,” will carry the song’s optimistic message to the global PH community. Paul will perform his song, “Let Me Breathe,” and screen the video at PHA’s 10th International Conference and Scientific Sessions June 22 in Orlando. All Conference attendees will receive the song on CD. Paul's project will also include a website where people who have seen the video or heard the song can make a post, illustrating the spread of this message.

Abraham Babu
Karnataka, India
Abraham’s project is developing a “Pulmonary Hypertension Manual,” a printed guide explaining PH, its symptoms and treatments, and the importance of physical activity for PH patients, an area of Abraham’s professional expertise. The manual will be translated into various regional languages and will be a resource at home for patients who must travel long distances to PH care centers. It will be distributed to patients through PH physicians in India. Read more

Hyuk-Jae Chang
Seoul, Korea
Working with PHA Korea, Hyuk-Jae’s project, “Social Awareness of PH,” will create posters and an updated Korean language edition of PHA’s Pulmonary Hypertension: A Patient’s Survival Guide. The book and posters will expand the previously limited educational opportunities for patients, caregivers and medical care providers in Korea. These resources will expand educational opportunities in Korea and will aim to draw more people into the Korean PH community. Hyuk-Jae hopes the project will help identify patients in Korea who have not yet been diagnosed with PH. Read more

Mineliz Colon
Carolina, Puerto Rico
Mineliz’s “Phenomenal Me” project presents PH patients with a series of 24 challenges per year to help them feel more in control of their lives despite their illness. The challenges focus the patient on raising awareness about PH as a way to dispel the pain and loneliness of having this disease. Some challenges will have patients contacting neighbors, friends and other patients. Others will help patients manage their feelings through writing, drawing and other activities. Patients will blog about their experiences and will keep track of challenges completed in a “passport.”

Rosanne Huber
Grayslake, Ill.
Rosanne’s project, “A Run for Hope, A Run for A Cure,” will encourage the PH community to be present to support her in running the Milwaukee Lakefront Marathon on October 7, 2012. Rosanne, a dedicated runner who has exercise-induced PH, will seek media attention for her story to build awareness of PH in the surrounding area. She hopes that this will be the start of an annual marathon and the growth of a PH running team.

Melissa Johnson
Oklahoma City, Okla.
Melissa’s project “What About PH?” will spread awareness of PH using table-top signs in restaurants throughout her area. The table toppers will present PH patient stories and will direct people to PHA. Melissa will also hang posters around the community listing the restaurants participating in this PH awareness program.

Sally Mackey
Sumter, S.C.
Sally’s project, “Living with PAHzazz!” will use her quilting skills and involve her quilting friends in creating beautiful quilts to lift the spirits of PH patients. The quilts will be raffled off at PH-related special events. Sally and her quilting circle will also produce fabric-covered key chains, pin-on buttons, ponytail holders and other accessories with the PHA periwinkle ribbon logo to help raise awareness of PH.

Todor Mangarov
Bulgaria
Todor’s project is called “Creating PH Community in Bulgaria and Meeting of PH Patients.” Its purpose is to increase the feeling of community among the 37 PH patients in Bulgaria, where treatment is available but patients do not feel connected to one another. Todor will hold a meeting to discuss the disease and share information on modern treatment methods and ways to live and cope with PH. This meeting is designed to reassure patients that they are not alone, that help is available and that one can continue living positively even with PH. The project can also be a model to other countries wishing to organize their PH communities. Read more

Bonnie Patricelli and Ryan Juntti
Clementon, N. J.
Bonnie and her son Ryan are raising awareness with their project “Hot Holders for Hope.” They will print and distribute 50,000 hot beverage cup sleeves to coffee shops in areas such as college campuses, train stations, airports, major city centers and tourist attractions. The sleeves will carry a message about PH awareness and will send people to the PHA website to learn more. Bonnie and Ryan’s research in applying for this project found that the average consumer of a hot drink spends 45 minutes with the drink and that the message on the sleeve is viewed by approximately six other people who are sitting, chatting, or passing by.

Brenda Reynolds
Hamilton, Mont.
Brenda’s project “PHAmerica Honors” is a website designed to name PH “ambassadors” all over the globe in an effort to promote a positive outlook within the PH community. The website will offer fun projects and contests for people affected by PH. Ambassadors will spread awareness while encouraging patients and families to take up the challenges. Brenda’s goal is to create a “global network of positivity.”

Sean Wyman
Bloomington, Calif.
Sean’s project, “Lips Painted Blue—An Animated Series,” will create short animated videos to be used as a resource and educational tool for children, parents, and medical professionals. In a child-friendly way, this series will explain PH, its symptoms, what to expect, and how to cope and have fun while living with PH. Sean developed this idea to fill a gap in material about PH that is presented in terms meaningful to children.

Visit this page for updates on the progress of all of these unique programs and look for reports in PHANews and Pathlight.

 

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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.