2014 Award Winners

PHA’s history is the story of inspired people with the drive to turn ideas into reality. For the fifth 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 2014.

In the Zebra Zone by Barbara Thompson, Memphis,Tenn. Barbara actively works to raise awareness at community events and wants to use her award to create a booth-display kit for community members to use to raise awareness in their own communities. Members of the community can order their own kit for free through the PHA Store.

Knockout PH by Abigail Jarrett, Alturas, Calif. PH patient Abigail will host a community awareness event at her local school, centered on the basketball game “Knockout.” She plans to have a PH nurse as a guest speaker and distribute educational and awareness-raising items from the PHA store.

PH Awareness by Kenya Blum, Kannapolis, N.C. Kenya will get the word out about PH this summer at several community festivals, including the Charlotte, N.C., motor speedway auto fair. She will create an interactive booth to draw in festival attendees and distribute educational materials and PHA novelty items.

Be Brave Awareness Campaign Video by Chloe Temtchine, New York, N.Y. Chloe hopes that her Be Brave awareness video will serve as a powerful visual companion to her song, which debuted in March 2014. It is her hope that through music, she can bring awareness of and attention to PH and those who are impacted by it.

PHA PSA Project Phase 3 by Steve Van Wormer, Burbank, Calif. In this third phase, Steve, a PHA Board member and previous Lantos grant winner, plans to create shorter PSA spots to meet the requirements of social and mainstream media outlets.

PH Community Education by Lisa Wheeler, MT, Nashville, Tenn. Lisa and her team at the Pulmonary Vascular Center at Vanderbilt University plan to host three education days for patients and their support persons. They plan to place a particular emphasis on genetic information for family members with a connection to heritable PH.

PH Notepads by Brittany Evans, Marietta, Ga. Brittany and members of the Generation Hope advisory board want to make sure that patients and doctors know all the resources available from PHA. Their solution: notepads printed with PHA’s most important web links and resources for both patients and medical professionals. Doctors, nurses and members of the community can order the notepads for free through the PHA Store.

Threads of Hope by Megan Katra, Anchorage, Ala. Megan plans to distribute quilting supplies to 30 sites across Alaska and unite the finished products into a quilt to be displayed at the Alaska State Fair, Alaska Federation of Natives annual gathering and at various other community gatherings as an impetus for awareness raising and PH patient connecting.

PH PumpPH Pump Pockets by Amanda McFadden, San Jose, Calif. Amanda is a parent of a child with PH and hopes to use her grant to help other parents of young PH patients. She plans to sew “pump pockets” onto onesies and shirts for infant and toddler patients. She will work with local children’s hospitals to distribute the finished products.

 

 

 

Breath of Life: Coping through Art by Perry Mamigonian, Fresno, Calif. Perry is the Fresno area support group leader. His group will learn about and participate in a group art therapy course designed for patients and families impacted by chronic illness. Upon completion, the group’s creation will be displayed permanently on the cardiac unit of Fresno’s Community Regional Medical Center as an awareness symbol.

Sharing Oxygen With My Doctor by Enrique Carazo, Madrid, Spain. Enrique is the parent of a child with PH, as well as the leader of Spain’s Foundation Against PH
(Fundacion contra la Hipertension Pulmonar — FCHP). Through FCHP’s project, Enrique and FCHP will hold a joint educational retreat for pediatric patients and families with medical providers to increase the connection among these groups in Spain.

Carmen Translation ProjectSpanish Posters and Table Stands by Carmen Lozada-Bruno, Vega Baja, Puerto Rico. Carmen plans to distribute Spanish language posters with information on
symptoms, diagnosis and the cause of PH across Puerto Rico’s pharmacies, emergency rooms, hospitals and government offices.

 

 

CTEPH Awareness: One Blood Doctor at a Time by Kathy Anderson, Lake in the Hills, Ill. Kathy, a chronic thromboembolic pulmonary hypertension (CTEPH) patient, plans to use her grant to increase awareness among hematologists and their patients, especially those with blood clotting disorders, about the risks of developing CTEPH.

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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.