Tom Lantos Innovation in Community Service Awards 2017 Winners
PHA’s history is the story of inspired people with the drive to turn ideas into reality. For the eighth consecutive year, Gilead Sciences is funding the Tom Lantos Innovation in Community Service Awards to keep that spirit thriving. The following projects have been funded in 2017.
Paint and Take Workshop for PH Patients
Mickey Krause, Largo, Florida
This is a workshop given by a professional artist for patients with PH. The artist will supply everything needed for the attendees to have a completed, ready to hang piece of artwork to take home with them. The PH patients will have an opportunity to share their experiences, strength and hope with each other. We can still have our dreams come true even with the limitations of PH. The workshop will be held 4 times.
The Story of Pongo, the Rare Purple Elephant
Ioanna Alissandratou, Attiki, Greece
Previously, a Lantos Award was given to create the story of Pongo. This year, the story of Pongo, the Rare Purple Elephant will be published. The project has been designed to prepare and educate children about PH. The purpose has been to explain PH in simple but meaningful terms to children as well as to adults. By telling Pongo’s story, we lay emphasis on the most common symptom of PH: becoming breathless. The story of Pongo has an optimistic message to show children that living with PH is difficult but not impossible.
Placemats for PH Awareness
Bonnie Patricelli, Clementon, New Jersey
Placemats will be created and focus on the early diagnosis campaign to spread awareness of PH. They will include symptoms and graphics, as well as a QR code that can be scanned with cell phones and send people directly to the PHA website. The placemats will be distributed to 153 diners throughout New Jersey, Pennsylvania and Delaware. They can also fold it up or tear the ad out and take it with them.
PH Info Start Packet
Zdenka Bradac, Pisarovina, Croatia
Recognizing the lack of awareness and information about pulmonary hypertension in Croatia, this project will adopt and distribute PHA’s Envelope of Hope resource so patients will be able to understand the next steps to take after being diagnosed.
Raising Awareness of PH
Eszter Csabuda, Budapest, Hungary
In small countries like Hungary, it is not easy to connect with patients and learn about PH. This will be an event where patients, caregivers and PH experts can connect in person to learn more about PH and how to live with it long-term. PHA Hungary will use all of its media channels to raise awareness of PH and this event.
PH in PH
Michelle Guerrero, Upper Mount Gravatt, Australia
This project will gather patients and medical professionals to hold a focus group, which will eventually create a survival guide specifically for PH patients in the Philippines. Through a website with enough information, patients will have better knowledge about their disease. This website, following the footsteps of PHA, will also open a space for patients to share their stories. With the website’s launch, a short awareness material will also be introduced.
Elaboration of an ACHPA Children’s Support Network and a Launch Campaign with Comics
Diana Isabel Lovera, Bogota, Colombia
This project will create the first support group for children with PH and create comics where 3 of the children are the protagonists. Its main purpose will be to change the concept of patient victimization to be a true hero and an example to follow. The support groups will also strengthen the parents and caregivers, and keep them aware of the latest scientific advances and medical treatments for child patients.
Elaboration of Healthy Menus for Patients with Pulmonary Hypertension
Juana Vanessa Rodriguez Lovera, Bogota, Colombia
An important factor for PH patients is their diet and learning to eat PH-friendly foods. A previous Lantos award funded the creation of Healthy Menu Primer, a cook book containing healthy recipes for patients with pulmonary hypertension. This year, the Healthy Menu Primer will be distributed to the PH community in Colombia.
No PH Patient is Left Behind
Paula Menezes, Sao Paulo, Brazil
“No PH Patient is left behind” project will make a traveling team to create and give short presentations supported by health professionals and children and adult oriented games in key places where poverty has a great prevalence of Schistosomiasis in Brazil. Schistosomiasis is the number 1 cause of PAH in Brazil. The team will select the villages affected by this parasite where, due to lack of awareness, people in these areas are often misdiagnosed with this parasitical disease. This project is intended to raise awareness of PH in underprivileged villages in Brazil.
Pulmonary Hypertension Awareness in Nepal Campaign Kick-Off (PHANKO)
Chooda Khanal, Miami, Florida
This project will raise awareness about PH among medical professionals, pediatricians, caregivers and patients with heart/lung conditions in hospital settings. This will include providing education about risk factors associated with PH, explaining the symptoms to watch among patients with congenital heart disease to help in prompt evaluation and response to address suspected PH cases. T-shirts printed in Nepali language with specific information about PH, symptoms of PH and care and support for PH patients will be distributed to each identified patients and their caregivers. This project will raise awareness about PH among a larger population.
Concientizando y Educando sobre PH en Peru
Maritza Rodriquez, Lima, Peru
Promoting PH Awareness and Education in Peru aims to promote awareness and education concerning PH throughout the community. Currently, Peru has minimal awareness and it is often difficult to receive pertinent information/resources as a patient. An objective of this project is to reach patients who may live far from the Capital.
Envelope of Hope – South Africa
Shanna Hiemstra, Bryanston, South Africa
This project will adopt PHA’s Envelope of Hope to provide South African PH patients with the knowledge they need to accept that there is a future for them and provide them with next steps. This resource will provide patients with facts and offer guidance for newly diagnosed patients including facts that they need and ways to receive support.
Promoting Patient Education for Group 2 Pulmonary Hypertension
Abraham Babu, Karnataka, India
A patient educational manual (Pulmonary Hypertension Manual – PulHMan) funded by the Tom Lantos Awards (2012) has shown to improve awareness (Heart Lung Circ. 2016 Jan;25(1):41-5). However, crucial education material for various types of pulmonary hypertension are lacking. Through this project we hope to be able to design and develop patient education material for patients with pulmonary hypertension from left heart disease.
Care to PH
Sagar Dhoble, Maharashtra, India
There is a need for increased education and awareness among the PH community in India. This project deals primarily with development of a mobile application or a website dedicated to pulmonary hypertension. This website/application will include all information that a person with PH searches for. This project intends to link the patient and caregiver to a PH medical professional and active PH communities.
PH Cook Book
Maricela Arce, Monterrey, Mexico
The PH Cook Book, was designed by nutritionists and Mexican mothers. It includes low sodium and nutritious recipes, and it is designed specifically for pulmonary hypertension patients. The PH Cook Book will be designed, printed and distributed to the Mexican PH community so they can make healthy and delicious food.