Tom Lantos Innovation in Community Service Awards 2011 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.
Asociación de Hipertensión Pulmonar (ANHP)
Everyone knows that living with PH can take an emotional, as well as a physical, toll on patients and family members. That’s why Spain’s Asociación de Hipertensión Pulmonar (ANHP), under the leadership of Juan Fuertes, is organizing a seminar on “Psychological Care for PH Patients.” The goal is to educate psychologists so they can provide professional care to PH patients, no matter where they live in Spain. It is also expected that the trained psychologists will inform their patients with PH about ANHP’s services. Read more
One of the great challenges that young adult female PH patients face is being told that they should not have children. Hannah Lahmeyer, a PH patient and adoptive mom, will be developing a “Guide to Building a Family while Having PH.” Hannah plans to work with a doctor, social worker and grief counselor to develop the content for this guide which will be widely distributed to the PH community and is particularly targeted to PHA’s Generation Hope, a group for patients in their late teens to early 30s.
Generation Hope member Colleen Brunetti will “Spread the Word” by developing Public Service Announcements (PSAs) that highlight PHA’s email groups. These groups help connect patients and family members, reduce isolation, and share tips for living better with PH. The PSAs will be promoted widely through PHA’s network of support groups as well as through members of PH Clinicians and Researchers and our PH Professional Network. Read more
Donna Lain, who lost her daughter Kari Beth Lain in 2003, wants to continue to give back to the PH community in Kari’s memory. That’s why she designed “Kari Bags,” which she will fill with age-appropriate toys, games and stress-relievers. “Kari Bags” will be distributed free-of-charge through pediatric PH specialists and centers as a way to brighten the day of kids who are living with PH. Donna hopes, too, that the bags will help educate adults and kids about the disease. Read more
In order to create a more cohesive PH community in Norway, PHA Norway, under the leadership of PH patient Hall Skåra, will host the organization’s “First Users’ Meeting.” Until now PHA Norway has functioned primarily through its website, but with this grant PHA Norway plans to bring patients and caregivers from Nordic countries together for the first time. A featured participant will be a patient from Germany who will help create links to other PH groups in Europe. Read more
Steve Van Wormer
Steve Van Wormer, dad to PH patient Lucas, will develop a series of “impactful, insightful and, most importantly, hopeful” digital Public Service Announcements (PSAs) through a “PHA Viral PSA Campaign.” The PSAs will feature the PH journeys of patients, caregivers and medical professionals as well as information about PH. They will be posted on YouTube and Hulu and will be created so that they can also be featured on the radio, TV and in print.
In Israel, Yosef Gotlieb, Joni Berg and Aryeh Cooperman will organize a “Symposium on Pulmonary Hypertension: Prospects for Progress” for PHA Israel. The group plans to hold an intensive one-day conference on PH for the medical, research and public health communities. Its goal is to inform professionals about the intricacies of diagnosis and treatment and the difficulties of living with PH. In addition, the organizers also plan to hold a briefing about PH for health reporters and other media professionals to enlist their assistance in raising public awareness. Read more
James “Dave” Rider
James “Dave” Rider will be raising awareness one step at a time as he walks across the state of Colorado in “Dave’s Walk of Hope, Awareness and a Cure for PH” — no simple feat for anyone, let alone for a PH patient. Dave plans to head out on September 1, 2011, and complete his walk on September 30, posting a daily video of the walk and the people he meets along the way. To bolster his awareness-raising efforts, Dave will issue press releases in the communities he will pass through as well as network news releases.
Visit this page for updates on the progress of all of these unique programs and look for reports in PHANews and Pathlight.