Every part contributes to the whole
Annual Report 2011
A Message from PHA’s Board Chair Dear PHriends, How many times have you wondered, “How can I possibly make a difference?” When facing something as overwhelming as pulmonary hypertension, perhaps you have even asked: “How can I live a fulfilling life with PH?” “What can I do to help others feel supported when coping with this disease?” Or, “What can I do to assist patients in being diagnosed earlier to benefit from current and emerging therapies?” As you read through PHA’s 2011 Annual Report, I am certain that you will easily recognize how every part contirbutes to the whole and that collectively we are the anatomy of hope. The Pulmonary Hypertension Association was founded in 1991 when, after years of searching for other patients, three patients and a loving sister united around a kitchen table with the intention to support each other and to identify others living with a scarcely known, life-threatening disease. Although they could not possibly have predicted what these wheels of ingenuity would set in motion, we have all benefitted immensely from their courage to ask, “How can we make a difference?” No less heroic are examples of other individuals whose desire to make a difference has resulted in the ever-growing hub of PH research, education and support that PHA embodies. Some examples highlighted in this publication include 235 support groups spread across the country; dozens of opportunities for online and phone connections between adult, young adult and teen patients, and caregivers and bereaved family members; in-depth education providing medical professionals at all levels with the information and collegial connections to improve the timeliness and quality of PH diagnosis and management; and tools and training to enable individuals to raise awareness and support for PH through print, the media, social networking and with policy-makers. One of the most exciting highlights in this report is the progress being made on the research front. Since 2000, PHA and our partners have committed $11.5 million to advance research in the field. Private donor support for research started with one person asking what he could do to make a difference when his 5-year-old daughter was diagnosed with PH. Jack Stibbs organized the first large event to support PH research and his vision has inspired others. Today, there are more than 60 special events each year supporting PH research and patient-serving programs. As we look back on 2011, please join me in remembering those who have lost their battle with PH, honoring those who remain on this journey, and thanking those who have brought us to this amazing point in the history of this disease so that our anatomy of hope transforms to a body in good health. In partnership and gratitude,
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Annual Report 2011
A Message from PHA’s President Friends, We say it many ways ... the power of one, hope is a verb and, in the subtitle of this year’s annual report, every part contributes to the whole. At PHA we are privileged to work with people who give so much of themselves — often in the most difficult circumstances — to make a difference. Bonnie Dukart, Barbara Smith, Candi Bleifer and many of our other early leaders essentially said the same thing: I do it because helping others helps me. Of course, we still often hear that from patients and their families but we also hear a variation on that theme from doctors and nurses and other medical professionals: Doing this reminds me of why I became a medical professional. Years ago, Dr. Michael McGoon of the Mayo Clinic said to me that there was so little that he could do to help patients before there were treatments. More recently he offered as a theme for a PHA Conference, Path to a Cure. What a difference time and treatments make. Things are changing and they are changing fast. When I came to work at PHA in 1999, the first treatment for this disease was approved only three years earlier. I have seen that number grow since 2001 to nine FDA approved treatments … with more on the way. This disease with 30,000 patients now has more treatments than all but two of the 7,000 rare diseases in the U.S. That fact is just one marker in PHA’s march to change the history of this disease. In the pages of this report, you will find many others. All that is being accomplished is because of the commitment of individuals like you … patients, family members and friends and medical professionals. Those individual efforts combine within the PHA structure to form a powerful engine for change. Thank you for all that you do. Together, we will beat this disease.
Rino Aldrighetti President and CEO
PHA thanks Michelle Smith, a PH patient from California, for designing the cover art for our 2011 annual report.
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Offering Support and Making Connections Support Groups
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“More than once, a new patient came to their first meeting, thinking there was no hope. They left in a completely different state. Those are the BEST experiences for a support group leader. You can actually see the transition on their faces.” ~ Joanne Sperando-Schmidt, Long Island, N.Y., Support Group Leader
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Annual Report 2011
ourtney Rankin went to her first support group meeting in Sacramento, Calif., two months after receiving a PH diagnosis. “I am so thankful for my support group,” she says. “It gave me so much hope and courage. I didn’t know anyone with PH before I went to my support group; it was so great to meet people like me. I strongly recommend it to others.” Courtney’s experience is not unique. Patients all across the country felt this connection and support in 2011 by participating in PHA’s more than 235 support groups. Support group leaders brought their members together, not only to share the challenges of life with PH, but also to practice chair yoga, learn about travel safety, giggle with “laugh experts” and much more. The Hawaii PH Support Group worked with a local artist to create special postcards from the group to send in sympathy and support for Japanese earthquake and tsunami victims. The “Colorado Springs Wheezers” organized “Crafts for the Cause,” a meeting for creative hands and minds to create crafts to uplift, raise awareness and educate. Groups from coast to coast — including in California and South Carolina — hosted legislative staff and members of Congress to help raise awareness about PH at the national level. Throughout 2011, PHA’s Support Group Central Fund sponsored meetings across the country. One of those sponsored meetings allowed Kevin Deeb’s group in Vermont to bring an unprecedented 41 people together. “It was so good to see all of the new patients and old talking with each other about their journey through the PH walkway,” Kevin says. “Everyone had a great time and they are looking forward to our next meeting … Thank you again for all of your support.” Two support group leaders are coordinating the creation of quilts to be showcased at PHA’s 2012 International PH Conference and Scientific Sessions. The quilts will be constructed of blocks created by support group members across the country. One pays tribute to those we have lost to this disease and the other to the work of our support groups.
Email Groups
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n 2011, PHA launched PHA Teens, a secure social network for teens living with PH. PHA Teens currently has 25 members. “I honestly don’t know if I would be where I am today if I didn’t have the support of my friends who have PH. They have been so amazing and I know they will always be there for me,” says Anna Jeter, age 15. “Now, with PHA Teens, I can meet even more people. Together we can create a community of strength that can help us get through anything, including pulmonary hypertension.” Generation Hope, PHA’s email group for patients in their late teens, 20s and 30s, launched a blog in 2011, and the group formed Generation Hope in Action, a subcommittee of Generation Hope devoted to raising awareness of PH and advocating through the use of video messaging, letter writing and social networking.
“I appreciate the ability to connect with other like-minded PH patients. I am the only PH patient in my area under 50, so Generation Hope is a breath of fresh air!” ~ Joshua Griffis, age 31, Generation Hope member from Omaha, Nebraska
“Dealing with multiple illnesses besides PH, I wanted to search for people who might have my problems to learn how they deal with them, and what I can do to make my life better. I talk with people online sometimes, ask them for advice, and I give some back. I feel this is my extended family and that there will always be someone out there to talk to no matter what.” ~ Susan, a PH patient living with COPD and sleep apnea.
PH Email Mentors
PHA’s
email mentors communicate with 10-15 patients and caregivers each month on topics ranging from day-to-day struggles and the need for emotional support to finding a doctor you can trust. Our team of 30 mentors includes a transplant mentor, a chronic thromboembolic PH mentor and a Spanish-speaking mentor. “As a PAH patient, I have learned that there are a great many new ways to measure success in all aspects of my life with PH: every new day, every event, every good doctor’s visit, etc. As a mentor for the PH Email Mentor program, I have also learned new ways to measure and experience success,” says Mark Arellano, who has connected with several mentees including a man who was dealing with a great deal of fear and anxiety as he faced IV medication and a possible transplant. “The patient himself has told me that he has succeeded in embracing his new life as a PAH patient mainly because he found the mentor program on PHA’s website.”
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Patient-to-Patient Support Line
PHA’s
Patient-to-Patient Support Line provides patients an immediate connection with another patient through the phone lines, and in 2011 the Support Line experienced its biggest week in history. PH patient and Support Line volunteer Liz Brigham received one call every minute throughout the afternoon on the day that Dr. Paul Donohue, a syndicated newspaper columnist, answered a question about pulmonary hypertension. “I kept getting call after call,” Liz says. “My first home phone battery died after an hour and a half, the second cordless phone died after two hours. I had to keep charging my phones hour after hour!” 1-800-748-7274
Caregivers
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ust as patients need support, caregivers, too, have unique needs, and in 2011, PHA implemented several programs to assist caregivers as they help their loved ones cope with this terrible disease. In 2011, Bill O’Donnell, his wife Laura and their daughter Shannon marked an important milestone in Shannon’s life: 10 years since her PH diagnosis. In that time, Bill and his family have benefitted from the resources PHA has to offer, and they have been instrumental in helping others find the support they need. Bill and Laura run a pediatric support group in New England, and they serve as PH Email Mentors, offering one-on-one email support to patients and caregivers in need. Bill also facilitates PHA’s Parents Telephone Support Group calls once a month for parents of children with PH. “I like to hear other people’s experiences while dealing with PH,” Bill says. “It is nice having an actual conversation with other parents.” The Parents Telephone Support Group is just one of the many parent resources PHA initiated in 2011. PHA launched the Coping as a Family section on PHA’s website, offering strategies related to the impact of chronic disease on family relationships. Parents can also request a Pediatric Resources for Family and Friends information packet, which provides information about PH, treatment and coping. In 2011 caregivers of adult patients began receiving PHA’s free Resources for Family and Friends information packet and, in September 2011, PHA launched a Caregivers Telephone Support Group, giving caregivers the opportunity to “meet” by phone to share support and information. In 2011, when PHA debuted its 4th edition of Pulmonary Hypertension: A Patient’s Survival Guide, it featured a chapter for caregivers for the first time. Learn more on page 9.
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Annual Report 2011
Bill O’Donnell (left), his wife Laura and their daughter Shannon started their journey with PH 10 years ago when Shannon was diagnosed in May 2001.
Providing Information: Online and In Print PHA Online PHA Classroom
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atients and caregivers everywhere benefit from the educational opportunities available in the year-old PHA Classroom, PHA’s robust e-learning center. Eight sessions from the Minneapolis PHA on the Road forum were recorded and are available in PHA Classroom, bringing the total number of offerings to more than 120. Also in 2011, the site was redesigned to make navigation easier, and a Spanish PHA Classroom was added to better address the needs of Spanish-speaking patients and caregivers. In 2011, approximately 4,000 took advantage of live e-learning events and recorded webinars.
PHA Classroom
e-Learning. Anytime.Riding Anyplace. the Wave to a Cure
www.PHAssociation.org/Classroom
PHA News
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hroughout 2011, PHA’s biweekly e-newsletter brought the latest information from the PH community straight to more than 6,000 inboxes. Issues feature the latest online educational offerings, tips for living with the disease and much more, including the always-popular blog post from PHA President Rino Aldrighetti.
www.PHAssociation.org/PHANews
Empowered Patient Toolkit
PHA
launched the Empowered Patient Online Toolkit, a web resource that helps people living with pulmonary hypertension manage their healthcare. The toolkit includes templates and checklists to help patients track their health history, record symptoms and concerns between appointments, organize insurance information and much more.
ONLINE TOOLKIT
www.PHAssociation.org/OnlineToolkit
PHA Online University , for medical professionals
PHA’s
medical website, PHA Online University, grew tremendously in 2011, featuring more than 30 new CME/CEU courses. Throughout the year, PHA Online University hosted eight live webinars for medical professionals. A new subcommittee was established to create CME content on psychosocial issues for the website, and a redesign process is underway to create a more dynamic and engaging site in 2012.
www.PHAOnlineUniv.org
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Videos
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n May 2011, PHA launched a series of brief online educational videos featuring PH patients and leading medical professionals. These videos provide newly diagnosed patients and family members with a snapshot of what they need to know to take the first steps after diagnosis. The videos cover such topics as the basics of PH, how to find a doctor, and why it’s important to get educated, seek out support and get involved. One of the videos features PH patient Colleen Brunetti, a member of PHA’s Generation Hope, our group for patients in their 20s and 30s. Colleen focuses on the difference that getting involved with Generation Hope made in her life.
“That is how I fight my disease. Once I found my niche and found my strength and got involved and started giving back and fighting back, my health could do nothing but improve along with that.” ~ Colleen Brunetti, PH patient
Insurance Resources: Online Insurance Guide and Beyond
PHA’s
Online Insurance Guide expanded beyond our website, delivering populationspecific information and updates into the homes and inboxes of PH community members around the country. Through webinars for parents of pediatric patients, monthly Coverage Connection e-newsletter updates, and Insurance-in-an-Instant planning guides to help support groups leaders plan insurance-themed meetings, PHA’s insurance program was able to provide relevant information to different segments of the PH community. Michelle Devon found PHA’s Coverage Connection blog through a friend. After reading a post about Pre-Existing Insurance Plans, she commented, “This is an amazing post to read. … I am so grateful someone linked me to this site so I could find it. ... I plan to spread this to everyone I know who has a pre-existing [condition]! Thank you!”
PHA in Print Pathlight
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athlight, the official newsletter of the PH community, expanded in scope and content in 2011. Readers of all ages found information on everything from finding the right PH specialist to solving insurance challenges and getting involved with advocacy and awareness. Jennifer Tahmoush shared her wisdom about productively dealing with insurance companies in her Pathlight article, and teen patients Becca Atherton (age 18) and Danielle Epstein (age 15) contributed articles on what it’s like to live with PH as teenagers. “We can make a difference in the way the world sees those who are different by sharing our stories of survival,” Becca writes.
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Annual Report 2011
Pulmonary Hypertension: A Patient’s Survival Guide
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n 2011, PHA proudly debuted the updated and redesigned 4th edition of Pulmonary Hypertension: A Patient’s Survival Guide, PHA’s comprehensive resource for patients and caregivers. The 4th edition features revised chapters on diagnosis; PH drugs; surgical treatments; children, teens and family planning; and insurance and legal matters. It also includes a new chapter for caregivers and a redesigned front cover and interior layout. Editions of the Survival Guide have been translated into five languages — Spanish, Korean, Farsi, Chinese and Japanese — and more translations are planned.
Understanding PH
What Is PHA?
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n 2011, PHA updated and redesigned our classic Understanding Pulmonary Hypertension brochure. The new version is more patient-friendly than ever with colorful sections on the definition, causes and diagnosis of PH, information on finding a PH specialist, and an overview of treatment options and coping strategies.
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n 2011, PHA designed a new brochure, “What Is PHA?� This handy 12-page booklet describes the wide array of services and programs available to everyone in our community — patients, caregivers and medical professionals, in the U.S. and abroad.
THE BASICS What is pulmonary hypertension? in the lungs. While in regular hypertension (also known as high blood pressure), the arteries throughout Symptoms of pulmonary the body are constricted, PH affects only the blood vessels in the lungs and the right side of your heart. This brochure focuses primarily on pulmonary arterial hypertension (PAH), a chronic and currently incurable disease that causes the walls of the arteries of your lungs to tighten and stiffen. In someone
hypertension may include:
The Basics
Pulmonary hypertension is a complex and often misunderstood disease. The term pulmonary hypertension (PH) refers to high blood pressure
• breathlessness • fatigue • dizziness • chest pain • fainting • swelling of the arms, legs or abdomen
with PAH, the right side of the heart has to work harder to push blood through narrowed arteries in the lungs. Eventually, the extra stress causes the heart to enlarge and become less flexible, compromising the heart’s ability to push blood out of the heart, through the lungs, and into the rest of the body.
Narrowing of pulmonary artery Enlarged right ventricle of the heart
Advances in Pulmonary Hypertension
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dvances in Pulmonary Hypertension, the first medical journal in the world dedicated exclusively to PH, reaches 40,000 medical professionals in 68 countries every quarter. In 2011, under the leadership of Editor-in-Chief Erika Berman Rozenzweig, MD, the Journal published issues on medical ethics, WHO Group II, pediatric PH and women’s issues. PHA is entering into licensing agreements to distribute Advances in Pulmonary Hypertension in India and Spain. The Indian edition will be produced in English. It will include a selection of articles from the U.S. edition and a brief note from a local editor. The Journal will also be translated into Spanish for distribution in Spain and Latin America, and both editions will be available online.
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Furthering In-Person PH Education Patient & Family Education PHA on the Road: PH Patients and Families Education Forum
PHA
visited four cities in 2011: Seattle, Wash.; Pittsburgh, Penn.; St. Louis, Mo., and Minneapolis, Minn. More than 800 patients and family members attended these forums, including PH patient Jaime Graham and her husband and caregiver Randy who attended PHA on the Road in Pittsburgh. “I was diagnosed about a year ago, and I’ve done a lot of research in that year,” Jaime says. As a result, even though she is newly diagnosed, she found herself able to share her knowledge and help others during the networking sessions at PHA on the Road: “We were in a session together, and this man was very honest and said, ‘I was diagnosed two weeks ago, and I’m so scared and nervous I can hardly stand it.’ So we had the opportunity to give him some information and tell him it’s going to be okay. It’s not unusual to have the feelings he’s having.” In addition to programming for adult patients and their caregivers, PHA on the Road featured support group sessions for parents, a pediatrics session and a Kids’ Room. As a result of advocacy efforts at all four forums, PHA sent more than 1,100 letters to Congress in support of the Tom Lantos Pulmonary Hypertension Research and Education Act. ON THE ROAD
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Annual Report 2011
Medical Professional Education PHA 30-City Medical Education Program
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he PHA 30-City Medical Education Program targets medical professionals who are less familiar with PH, and presents information on diagnosis and management of the disease to physicians and allied health professionals in geographic locations that lack recognized experts or PH centers. In 2011, the 30 dinner symposia reached more than 1,000 physicians and allied health professionals.
As a result of this program, one 30-City Program attendee explains, “[I’ll be] more aware of PH and PAH [and will] refer patients to a cardiologist who has expertise in this specialized area.”
PHA Preceptorship Program
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he PHA Preceptorship Program provides direct instruction on state-of-the-art PAH diagnosis and management to physicians and other health professionals who help care for patients with PAH. In 2011, 10 of these day-long programs, led by major PH centers, took place nationally.
PHA Medical Education On-Demand Program
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he PHA Medical Education On-Demand Program allows medical professionals to build their own PH medical education program. Each host can choose from a list of program topics and formats (webinar, dinner, grand rounds, lunch and learn), as well as from a list of 50 PH experts to serve as the speaker for the event. In 2011, this program educated more than 1,300 medical professionals across the country.
Ronald Oudiz, MD
Building Medical Education in PH Program
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hrough the Building Medical Education in PH program, PHA partners with PH centers across the country to help promote their continuing education programs and increase awareness of PHA services. In 2011, PHA partnered with 12 centers. “Building Medical Education programs are a great way for centers to connect with our colleagues and peers in the community to build alliances that improve our capacity to serve and treat our patients,” says Dr. Murali Chakinala.
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Advocating and Raising PH Awareness PH Aware Campaign and 435 Campaign
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“If more people are willing to use Facebook and other social networking sites to help spread PH Awareness on a daily basis, we can educate the world about pulmonary hypertension.” ~ Kimberlee Ford, PH patient from Washington, D.C.
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Annual Report 2011
he 435 and the PHAware Campaigns were founded on the idea that every patient’s PH story is a powerful tool for raising awareness about the disease. Whether the target was media coverage through the PHAware Campaign or legislative impact through the 435 Campaign, our grassroots advocates worked together in 2011 and made a difference across the country. Members of the PHAware Campaign, PHA’s grassroots campaign to raise awareness of PH in the media, took on the 50 State Media Challenge in 2011 to get a PH-focused news story in the media in every state by the end of the year. By October, PHers had recorded 87 successes in 31 states. Jim Gebhardt joined the PHAware Campaign in 2011 because he wanted to share his PH journey and use his nine-day, 4,015-mile motorcycle ride through 11 states in the American west as a way to raise awareness of this rare disease. For Jim, his motorcycle ride combined his desire to continue living his life despite his PH with raising PH awareness. In an article in The Leavenworth Times, Jim says, “You may not be a motorcyclist, but if there is something in your life that drives you, that excites you, that makes you want to face each new day, I encourage you to try to maintain that activity. Look for creative ways to manage your PH and do not allow your PH to manage you.” In April 2011, members of the 435 Campaign, PHA’s grassroots advocacy network, worked together to light up congressional phone lines during PHA’s first National PH Call-In Day. Advocates called and educated their Members of Congress about pulmonary hypertension and the only PH-specific bill in Congress, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011. PHers like Melanie Kozak spread the word about the call-in day through Facebook and other social networks. “I made the calls!! It was super easy! I do feel very accomplished and urge anyone who can call to do so today,” Melanie wrote to her family, friends and fellow PHers on Facebook after calling all three of her Members of Congress. Kimberlee Ford also worked actively with her social networks during PHA’s National Call-In Day. Then she continued to raise awareness online by creating PH Awareness Day on Facebook. On July 8, 2011, more than 1,100 members from PH communities all over the world set out to raise PH awareness. The PH Awareness Day Facebook page was flooded with photos and messages from people around the world who engaged in raising awareness. Kimberlee’s can-do attitude and her passion for legislative advocacy made her a natural speaker for the November 2010 Congressional Luncheon where she addressed a crowd of patients, family members and legislative staff about her PH journey and the need for more PH research.
Joyce Gore, a new 435 Campaign member, met with Representative John Sarbanes’ (D-MD) office at PHA’s Congressional Luncheon in November 2010, and followed up with his staff as soon as the Tom Lantos PH Research and Education Act was reintroduced in 2011. In the spring, after hearing from his office that Representative Sarbanes would be co-sponsoring the bill, Joyce exclaimed, “I never thought I could make a difference!”
Insurance Advocacy
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rom California to North Carolina and states in between, PHA’s Insurance Advocacy and Education Program made noise in 2011 — and insurance companies listened. Our advocacy efforts influenced the PH policies of major insurance providers and government institutions, including BlueCross BlueShield, Coventry Health Care, the California prison system and the Social Security Administration (SSA). When BlueCross BlueShield of North Carolina (BCBS) implemented a policy that it would no longer cover combination therapy for oral PAH medications, Dr. Victor Tapson at Duke University Medical Center joined with others on PHA’s Scientific Leadership Council in educating the BCBS team about PH and combination therapy. Their advocacy led BCBS to overturn this adverse policy.
Strengthening International Ties
PHA
now holds Memorandums of Understanding (MOUs) with 26 PH organizations around the world. In 2011 we signed MOUs with the New Zealand PAH Trust organization and PHA Bulgaria, strengthening ties between PHA and our partner organizations. Through our international seed grant program, PHA is able to provide start up funds for developing PH associations. In 2011, PHA South Africa received a seed grant for its project entitled, “Getting Started for PH,” which includes the production of marketing materials, awareness days, and further development of PHA South Africa’s website. Members of PHA South Africa
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Special Events
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hroughout 2011, the sense of community and connection among PHA volunteer event planners became evident all across the country. When seasoned event planner Betty Lou Wojciechowski spoke at the “Phenomenal Hope for a Cure Brunch” in Omaha, Neb., in 2010, she made a strong connection with event organizer and PH patient Carol Lindstrom, who promised to return the favor. Despite facing medical complications in the months prior to Betty Lou’s 2011 event, Carol crafted a quilt named “Following the Steps to a Cure,” that was auctioned off at Betty Lou’s “2011 Swing 4 the Cure: Wojo PG Golf Classic,” raising more than $1,000 for the event. One of the volunteers at Betty Lou’s event was Gerardo Santos, who recently underwent pulmonary thrombendarterectomy (PTE) surgery for his PH. Only eight weeks after his PTE surgery, with two oxygen tanks and his pulse oximeter in tow, Gerardo completed the “2nd Annual Race 2 Cure PH: Taylor Caffrey Memorial 5K” in Anahaim Hills, Calif. “Race 2 Cure PH” honored the memory of Taylor Caffrey, who lost her battle with PH at the age of 4. Through this event, Taylor’s parents inspired many others, including the Godina family on the other side of the country. In April 2011, Missy & Joe Godina culminated months of planning and community engagement with the Inaugural “Walk 2 Cure PH” in Euclid, Ohio, an event that honored the memory of their young daughter, Ellie, who lost her battle to PH in 2010. The Godina family drew inspiration from the Caffrey family, and Shari Caffrey provided mentorship to Missy throughout the event planning process and flew from Anaheim, Calif., to attend the walk in Ohio. The walk had more than 400 registrants and raised more than $33,000 for PH research and services.
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“We wanted to raise awareness and funds for a cure so that other families won’t have to go through the same thing.” ~ Missy Godina, pictured above with her husband Joe at the Inaugural Walk 2 Cure PH in memory of their daughter Ellie
In 2011 three events celebrated their five-year anniversaries: Spur a Cure for PH (Arizona), CAPHS Walk & Roll (Ohio), and the North Texas Fun Walk. Throughout 2011, PHA’s Special Events Central Fund sponsored more than 28 events. This fund allows planners of PHArecognized special events to apply directly to PHA for funding.
Merle Reeseman, PH patient and event organizer, at the CAPHS Walk & Roll (Ohio)
Participants cross the finish line at the North Texas Fun Walk
The welcome committee and event co-chair Amy Mosely (right) at Spur a Cure for PH (Arizona)
Tom Lantos Innovation in Community Service Awards
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n 2011, PHA awarded eight recipients with a Tom Lantos Innovation in Community Service Award. These awards support members of the PH community who are making a significant impact by raising awareness and increasing patient support in unique and replicable ways. Generation Hope member Colleen Brunetti helped “Spread the Word” by developing a Public Service Announcement (PSA) to highlight PHA’s email groups. The PSA is featured on PHA’s website and is being promoted through PHA’s network of support groups and members of our PH Professional Network. Donna Lain, who lost her daughter Kari Beth Lain to PH in 2003, wanted to give back to the PH community in Kari’s memory. She designed “Kari Bags,” which are filled with age-appropriate toys, games and stress-relievers. The bags are distributed free-ofcharge through pediatric PH specialists and centers as a way to brighten the day for kids who are living with PH. These awards also allowed international associations to educate patients and medical professionals in 2011. On June 7, Asociación Nacional de Hipertensión Pulmonar (ANHP) convened a meeting of psychologists and psychiatrists in Spain to discuss the psycho-social needs of PH patients, and the Israel PH Association held a seminar on June 16, 2011, in Tel Aviv, for physicians and researchers.
Attendees pack the room at the PH conference in Tel Aviv.
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Increasing Medical Outreach Scientific Leadership Council
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he Scientific Leadership Council (SLC), a group of world-renowned PH physicians and researchers, oversees the development of the wide array of all PHA’s medical programming. In 2011, the SLC expanded its committee structure, increased collaboration with the leaders of PH Professional Network, and explored initiatives such as an Early Diagnosis Campaign that would shorten the time to diagnosis for PH patients. The SLC has also encouraged the review and expansion of PHA’s research program and is laying the building blocks for a mentoring program to encourage young researchers to enter the field of PH.
The SLC ranks include doctors like Myung Park, MD, from the University of Maryland. Dr. Park is chair of the Medically Led Sessions Committee, which is actively planning for PHA’s 10th International PH Conference and Scientific Sessions in June 2012. “I became involved with PHA in an effort to help my patients obtain information on PH. I realized early on that PHA is a wonderful resource for people searching to educate themselves about PH or wanting to meet others with whom they can share their experiences or ask questions,” Dr. Park says.
PH Clinicians and Researchers
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n 2011, members of PH Clinicians and Researchers (PHCR) unveiled an expanded and updated Find a Doctor Directory on PHA’s website to assist patients in locating and identifying PH specialists. The web page also features an instructional video and a guide to help patients navigate the process of choosing a doctor who is qualified to manage PH care. Also in 2011, members of PHCR began receiving the PH Research Roundup, a monthly e-newsletter with research and educational opportunities for medical professionals. In order to increase best practices in treating PH globally, in 2011 PHCR began offering free first-year memberships for non-U.S. physicians and free ongoing memberships for physicians living in countries with a gross national per capita income of under $5,000 USD.
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Annual Report 2011
PH Professional Network
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n 2011, the PH Professional Network (PHPN) changed its name from PH Resource Network to more accurately reflect the increasing diversity of professional disciplines among its members. In September 2011, the PH Professional Network Symposium Inspiring Hope: New Directions in PAH took place in Arlington, Va. With 426 attendees, this Symposium was the largest to date and offered a wealth of education to nurses, pharmacists, respiratory therapists and physician assistants. The Symposium poster hall featured 40 abstracts and posters — more than double the number from Symposium 2009. Also in 2011, the PHPN membership committee launched a newly revitalized PHPN Mentor Program, providing new PH professionals with the opportunity to connect with more seasoned providers in the field.
“PHPN Symposium was great for me because it provided the opportunity to network with and learn from PH professionals from across the country,” says Fran Rogers, NP, an attendee of the 2011 Symposium. ~ Fran Rogers, NP, 2011 Symposium attendee
Research
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wenty years ago there were no treatments for pulmonary hypertension available. Through focused research there are now nine PH-specific treatments with more in development. But at PHA, our ultimate goal is a cure, and that is why PHA continues to support the work of researchers until the day arrives when no one suffers from PH. “Things are moving so quickly now: the last decade has been really remarkable and led to so many new discoveries that moved really rapidly into new therapies,” says Serpil Erzurum, MD, research committee chair of PHA’s Scientific Leadership Council. As Dr. Erzurum explains, it takes a whole community to make great strides in research happen: “We need community engagement and patient partners. We also need the research of bench scientists and for clinical scientists to translate that research safely and rapidly into practice. We need the government on board with that, and we need PHA’s networks and connections. We don’t know where the next big win is going to come from. The more people we get involved, the more big ideas we have, the quicker we’ll get to better care and discoveries that lead to more treatments and a cure. … Only through research can we get to a future where PH patients can expect to live long and healthful lives.”
“The goal is a cure, and I think we can do it.” ~ Serpil Erzurum, MD, Research Committee Chair, PHA Scientific Leadership Council
Read about PHA’s 2011 Research Award Recipients
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PHA Research Award Recipients
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hrough partnerships with the National Heart, Lung, and Blood Institute (NHLBI), the American Thoracic Society (ATS), the American Heart Association (AHA) and Pfizer, PHA has committed $11.5 million to advance research in the field since the inception of PHA’s research grant program in 2000. Recipients of the 2011 PHA/American Thoracic Society/Pfizer Research Fellowship in Pulmonary Arterial Hypertension • Won-Kyung Cho, PhD, Yale University School of Medicine — “The Role of IL-13 in the Pathogenesis of Pulmonary Arterial Hypertension” • Kazuyo Kegan, PhD, Johns Hopkins University School of Medicine — Hypoxiainducible factor-1 mediates Th2 immune response during development of pulmonary hypertension Recipient of the 2011 Mentored Clinical Research Grants (K08 Program): A PHA National Heart, Lung, and Blood Institute (NHLBI) Partnership • Edda Spiekerkoetter, MD, Stanford University Medical Center — “Modulating BMPRII signaling in Pulmonary Arterial Hypertension” Recipient of the 2011 PHA/American Heart Association Postdoctoral Fellowship • Salina Gairhe, BSC, MSc, MSc, PhD, University of South Alabama, Mobile — “Sphingosine 1 Phosphate Mediates Sustained Vasoconstriction in Pulmonary Arterial Hypertension” Recipients of the 2011 PHA/Pfizer Proof of Concepts Research Grants • Mary Beth Brown, PhD, PT, ATC, Indiana University, Indianapolis — “Clinical Investigation of a Daily Walking Program plus L-Arginine Supplementation for the Treatment of Pulmonary Arterial Hypertension” • Ferhaan Ahmad, MD, PhD, University of Pittsburgh, Pittsburgh — “Applying Genomics as a Springboard to Novel Echanisms of Pulmonary Hypertension”
Robyn Barst Pediatric PH Research Fund
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he Robyn Barst Pediatric PH Research Fund got a big boost in 2011 when the Cardiovascular Medical Research and Education Fund (CMREF) provided PHA with a $500,000 grant for pediatric research, supplementing generous gifts from Dr. Barst and other donors. The CMREF gift has put PHA closer to the time that we will be able to fund targeted research on pediatric pulmonary hypertension.
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Annual Report 2011
Robyn J. Barst, MD
Development and Finance Supporting Our Programs and Services
PHA
is grateful for each and every gift we receive. Without the financial support of individuals, foundations, organizations, and corporations, we would not be able to meet the needs of the PH community. Our dedicated donors and volunteers make it possible for PHA to carry out our mission: to fund research, to provide programs that support and educate, to raise awareness of PH, and to advocate for health legislation that will improve lives. PHA’s members are the backbone of our community. Each PHA member joins with thousands of others to become one voice advancing our collective cause. When PHA talks to policy makers, the media and funders, we can tell them how much support we have from those who live with PH daily. PHA is particularly grateful to the thousands of members and donors who contributed to PHA in 2011, and we are especially thankful for our Sustainers Circle donors who help keep hope alive with monthly gifts. All that we do would not be possible without your support. On behalf of the entire PHA community, we thank you.
Legacy of Hope Society
PHA’s
Legacy of Hope Society honors those who have included PHA in their estate plans or whose legacies have been realized. Legacy donors make a special commitment to PHA, ensuring that our work will go on for all those whose lives are affected by pulmonary hypertension.
Sandra Alt Awood Dauna Leigh Bauer Sylvia Marie Becherer Gloria G. Blodgett Dorothy E. Bradley Roberta F. Browning and Lee Broadbent Rita and Bruce Brundage Jane P. and Harold P. Cooper James F. Corbett Laura Hoyt D’Anna, DrPH Charles W. DeVier, III Linda M. Feibel Barbara Gamer Tammy and Dean Hazen
Mary and Carl Hicks Jacquelyn Holt Richard L. Horrocks Jessie Kohler Terri L. Kopp Gloria Lang Thomas and Mary Jo Linnen Sally Maddox Bonnie and Michael McGoon Joseph W. Mihuc Karen Moody Marjorie D. Mott Joyce L. Mowrer Dorothy and Harry Olson Rita and Guy Orth
Pat and Jerry Paton John and Cynthia Pickles Carol Posner and Marc Priore Frances A. Price Louise and Gene Salvucci Judy and Ed Simpson Marcia and Jack Stibbs Helena Strauch Frank A. Tobac Torres-Gonzalez Family Deborah and Roger Towle Carol B. Ungar Daniel R. Walsh Andrea and Stephen White
Pulmonary Hypertension Association
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PHA in Top 2 Percent of Rated Charities
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n recognizing PHA for the eighth consecutive year with a 4-Star (the highest) rating, Charity Navigator President and CEO Ken Berger noted that this indicates that PHA “outperforms most other charities in America” — and is an achievement reached by only 2 percent of charities in the U.S. Charity Navigator, America’s premier charity evaluator, went on to say that this designation “differentiates PHA from its peers” and signifies that we execute our mission “in a fiscally responsible way.” PHA is also an accredited charity of the BBB Wise Giving Alliance.
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Annual Report 2011
Excerpts Only
**Full audit available at www.PHAssociation.org/ AboutPHA/2010Audit
Revenue 2010 PHA 2010 Revenue 2010 Revenue Membership 1.9% Individual Donations 3.5% Individual Donations - Research 3.0%
Membership 1.9%
Individual Donations 3.5%
Corporate Giving 18.8%
Individual Donations - Research 3.0% Corporate Giving 18.8%
Medical Education 27.2%
Medical Education 27.2% Endowments 2.4%
Endowments 2.4%
Other Groups 6.0%
2010 Expense
2010 PHA Expenses
2010 Expense Patient & Member Services 13.5% Conference 16.3% Patient & Member Services 13.5%
Web/Internet Services 3.3%
Conference 16.3%
Print Services 2.8%
Web/Internet Services 3.3% Print Services 2.8%
Medical Education 25.5%
Medical Education 25.5%
Foundations/Grants 3.3%
Advocacy and Awareness 4.0%
Workplace Giving 1.8%
Medical Services 15.0%
Special Events 2.4%
Research 6.5%
Special Events - Research 4.5%
Management & General 7.4%
Conference Revenue 18.8%
Fundraising 5.7%
Other Groups 6.0% Foundations/Grants 3.3% Workplace Giving 1.8% Special Events 2.4%
Investment Gains 6.4%
Special Events - Research 4.5%
Conference Revenue 18.8%
Advocacy and Awareness 4.0% Medical Services 15.0% Research 6.5% Management & General 7.4% Fundraising 5.7%
Investment Gains 6.4%
Pulmonary Hypertension Association
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Corporate Committee PHA is able to meet the needs of our community in part thanks to the financial support of our funders. In 2011, 13 corporations collaborated with PHA as members of our Corporate Committee. We are grateful for their support on a wide variety of awareness and educational projects and activities. Accredo HealthGroup, Inc. Actelion Pharmaceuticals US, Inc. Bayer HealthCare CVS Caremark CuraScript Gilead Sciences, Inc. GlaxoSmithKline Eli Lilly & Company Lung LLC Medtronic, Inc. Novartis Pharmaceuticals Pfizer Inc. United Therapeutics Corporation
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Annual Report 2011
Leadership as of December 2011 Board of Trustees
Scientific Leadership Council
Laura D’Anna, DrPH, MPA, Chair Vallerie McLaughlin, MD, Chair-Elect Sally Maddox, Secretary Roger Towle, Treasurer Carl Hicks, Immediate Past Chair Robyn J. Barst, MD Colleen Brunetti Linda Carr Richard Channick, MD Louise Durst, RN C. Gregory Elliott, MD John Hess Dunbar Ivy, MD Tony Lahnston Michael McGoon, MD Rita Orth, RN Cindy Pickles, RN Diane Ramirez Harry R. Rozakis Traci Stewart, RN Jack Stibbs Steve Van Wormer Rev. Steve White, PhD
Vallerie V. McLaughlin, MD, Chair Richard Channick, MD, Chair-Elect Todd Bull, MD Charles Burger, MD Murali Chakinala, MD Serpil Erzurum, MD Karen A. Fagan, MD Robert Frantz, MD Nicholas S. Hill, MD Marc Humbert, MD Dunbar Ivy, MD Zhi-Cheng Jing, MD Anne M. Keogh, MD Dinesh Khanna, MD Michael Mathier, MD Michael D. McGoon, MD Ronald Oudiz, MD Myung Park, MD Andy Peacock, MD Tomas Pulido, MD Erika Berman Rosenzweig, MD Virginia Steen, MD Duncan Stewart, MD Darren Taichman, MD Victor F. Tapson, MD Jason Yuan, MD
Board Emeritus Harry Olson Dorothy Olson Jerry Paton Pat Paton, RN Edwin Simpson Judith Simpson, RN, EDS
Ex officio Rino Aldrighetti
Liaisons Louise Durst, RN, PH Professional Network Harry Rozakis, Patient
Distinguished Advisors David B. Badesch, MD Robyn J. Barst, MD Bruce H. Brundage, MD C. Gregory Elliott, MD
Pulmonary Hypertension Association
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Every part contributes to the whole
801 Roeder Road, Suite 1000 Silver Spring, MD 20910 301-565-3004 Patient-to-Patient Support Line: 1-800-748-7274 www.PHAssociation.org www.PHAOnlineUniv.org