myPHA: A Legacy of Connection Blossoms Online

This week’s blog is written by Olivia May. Olivia has been working hard as part of the team developing myPHA. This new multi-purpose communications system for PHA has been designed to make it much easier to find what PHA offers that is of interest to you specifically and to better connect members with common interests. Put another way, you tell us about your interests, and myPHA will focus on getting you what you’re looking for. 

PHA has been built on communication and community. myPHA is the newest embodiment of those values. We all hope it will bring new information, connections and opportunity. I encourage you to join the hundreds of myPHA  members who have already signed up for this great new service during its inaugural month!

PHA's Founders at the Kitchen Table

As well-known as the story is, it’s difficult to write about PHA’s new online community without acknowledging our origins. The founding of PHA as a support group of four gathered around a kitchen table is a powerful image that remains at the center of our mission and efforts. Connecting patients and caregivers to each other was the first step in creating the organization that exists today – but that doesn’t mean it’s no longer a part of our work. Reaching out to those affected by PH is an ongoing project that is essential to making our resources available as well as maintaining a close understanding of our community. Making it possible for one patient to talk to another is no less important now than it was in 1991; however, we now have ways of doing it that have broadened our reach and united our community on an unforeseen scale.

Our new online patient community myPHA is the latest development in these efforts. Unlike the founding members, patients diagnosed today are often using the Internet as their primary means to finding information as well as finding others like them. According to a 2013 Pew Research Study “Health Online,” 1 out of 3 Americans have gone online to figure out a medical condition. Seventy-two percent of Internet users say they looked online for health information of one kind or another within the past year. With these numbers in mind, it’s easy to see how essential PHA’s online resources are to newly diagnosed patients as well as those who are already connected to us. And our online presence isn’t only a starting point to establish contact – for many, engagement with PHA happens exclusively online.

PHA created myPHA to offer a virtual home to our community. That meant we had to ensure a level of technical sophistication that would support the diversity and strength of our members. The PH community interacts in a variety of ways, for a variety of purposes. Some see the value in sharing their story as a singular message of hope, while others prefer to engage one-on-one. We chose the platform that hosts myPHA to honor the many styles of support that we already saw happening and to bring them together in one online “place.” myPHA is now home to

• a community-wide discussion board, 
• an interactive blog archive, 
• customized resource lists, 
• groups that are private to specific sub-communities, 
• and more! 

Best of all, it’s flexible to the changes that are sure to come as our community continues to grow and sprout new ideas and practices. Read the spring Pathlight article for FAQs and other details about myPHA

Throughout the process of designing and launching the site, we’ve received indispensable feedback from PHA PHriends, Board Members, support group leaders, and other involved patients and caregivers. We made it a priority to let the community perspective guide the major decisions of the site as we built it out, and that shows today. From the Groups and Blogs down to the design details, this is an online community that was shaped by and for PH patients and caregivers.

It has been a unique honor and pleasure to watch the site take flight. Since launching on April 10, 2015, myPHA has exemplified the PH community’s powerful ability to adapt and come together in new ways. Today, more than 600 members are registered on the site. We see the importance of this virtual resource every time a member joins and connects with others like them for the first time. Now, a patient diagnosed in a geographically isolated area can be immediately connected to an email mentor, information about their type of PH, a private group of patients like them, an informative discussion forum, a list of members living in their area and a collection of patient narratives. This is an enormously different experience from that of a patient diagnosed 10 years ago, and we will continue to work hard to improve that experience in any way we can. We hope that myPHA will continue to grow and provide a bustling home to the learning, support and connection that our community needs and provides. Connect with myPHA now

PHA Brings One-Day Regional Conferences to Patients and Families

When I came to PHA in 1999, one of the first things that struck me was the excitement and anticipation surrounding our International PH Conference. Given the amount of work to produce these very special events, the reason PHA hosts them every two years, instead of annually, also became clear. However, that 24-month gap led to a dream by Board members: someday PHA should produce annual regional conferences, events where people wouldn't have to travel as far to receive the valuable education and networking opportunities that such meetings offer. 

It took almost a decade but in 2009, PHA had grown to the point where we were able to make the dream a reality. The vehicle we created is PHA on the Road, the patient component of PHA’s Medical Education Program, and in this guest blog post from PHA staffers Jodi Holland and Megan Mallory, we share the exciting plans for PHA’s seventh year of PHA on the Road. We hope you will join us in one of our four destination cities.

PHA is hitting the road again this year when PHA on the Road: PH Patients and Families Education Forums visits Atlanta on June 20, Philadelphia on July 25, Phoenix on Oct. 3 and St. Louis on Oct. 10. PHA on the Road recognizes that the pulmonary hypertension patient is the heart of a larger PH community that makes support, connection, information and education available to anyone who needs it. Since the program’s inception in 2009, these free patient-focused educational forums have featured interactive presentations, general sessions, time to meet other patients and caregivers, and exhibits. Forum speakers are leading PH healthcare professionals from the local area.

As Sarah Wisdom, from Yuma, Ariz.,
who has a family member with PH, shares, “[The forum was] very informative and [provided] great information for our whole family.” Patient Rebecca Talob, from San Diego, Calif., agrees, adding that the healthcare professionals who sat on session panels “were great and explained things so they were understandable and useable.”

Many patients also appreciate the opportunity 
PHA on the Road offers for networking. For some, these forums are the only time they and their family meet other patients. “It was very encouraging to know we're not alone,” Sarah notes.

General Session Topics at the Forums May Include:

• Diagnosis: How is PH Diagnosed?
• PH Treatments: What are the Choices and Which One is Best for Me? 
• Long-term Medical Management of PH
• What is on the Horizon? Clinical Trials and Drug Development

Breakout Session Topics at the Forums May Include:

• Emergency Situations
• Exercise
• Insurance Issues
• Intimacy Issues
• Nutrition
• Pediatric PH
• PH and Emotional Wellbeing
• PH and Other Associated Conditions
• Traveling with PH

To ensure that patients, caregivers and family members get the most out of PHA on the Road, the forums are offered free of charge and include lunch and a kids' room where qualified volunteers and staff keep an eye on children as they play games while their family members receive this invaluable information.

For more information about PHA on the Road or
 to register, visit www.PHAssociation.org/OnTheRoad, contact OnTheRoad@PHAssociation.org or call 301-565- 3004 x763.

PHA on the Road is a program of the PHA Medical Education Fund, made possible 
by unrestricted educational grants from Actelion Pharmaceuticals US (Diamond sponsor), Gilead Sciences (Platinum sponsor), and United Therapeutics and Bayer HealthCare (Gold sponsors).

PHA Offers Grants to Support PH Research

This week’s blog is an invitation to researchers to seek PHA funding through our multiple funding programs. It is also a celebration of what a committed rare disease community can do to advance knowledge that will lead to change and a better future. The research that PHA began to fund in 2000 has become building blocks for what came next and what will come tomorrow. Almost all of the money that PHA invests in this effort has come from members of our community who have organized special events and/or given generously themselves.  

A by-product of PHA’s research efforts was highlighted recently by Dr. Karen Fagan, Chair of PHA’s Scientific Leadership Council, when she studied where young researchers go after receiving a PHA research grant. Looking at our sponsorship of Career Development Awards with the National Institutes of Health, Dr. Fagan found that ALL researchers who were awarded this grant from PHA have stayed in academic medicine and importantly in the area of PH-related research and clinical care. This means PHA is not just funding grants. Our donors are making it possible and attractive for the most promising clinicians and researchers to continue in PH research.   

An important part of PHA’s mission is to find ways to prevent and cure pulmonary hypertension, and to that end, PHA has committed more than $15 million, over the last 15 years, to researchers seeking to better understand the disease. This year, PHA is making more than $500,000 available to support scientists who are looking for answers that could lead to better outcomes, new therapies and, ultimately, a cure for PH.

Thanks to PHA’s generous community members and historical partnerships, PHA’s Research Program provides support for PH research projects ranging from early, exploratory and developmental work to projects that facilitate mentorship and ensure a future of promising, innovative investigators in the field.

Our donors know that their generosity is leveraged to create even more opportunity for researchers to learn about and change the history of this disease. For example, PHA’s KO8/K23 award annually combines $312,000 in PHA contributions with over $500,000 from the NIH to create an over $800,000-per-year research program. Other PHA research programs are enlarged through similar matches.

In 2015, PHA’s Research Portfolio includes funding for new awards in:

• The first program focused on pediatric PH research 
• A grant that encourages investigators to explore novel ideas and avenues that could enhance the understanding of PH 
• An award that supports faculty-level investigators studying the diagnosis, pathogenesis, treatment or outcomes of PH 
• A grant that offers support to a recipient of a mentored career development or patient-oriented research grant awarded by the National Heart, Lung, and Blood Institute (NHLBI)

Researchers, be sure to apply for one of these grants. Patients and families, we hope you will share this information with the healthcare professionals in your lives. The 2015 PHA grant opportunities include:

• The Joel Belt Pediatric PH Research & Mentoring Grant 
• Cordelia’s Pediatric PH Research & Mentoring Grant 
• The Matthew and Michael Wojciechowski Pediatric PH Research & Mentoring Grant
• The Jerry Wojciechowski PH Proof of Concept Grant 
• PHA/ATS Research Fellowship in PAH
• NHLBI K08/K23 Supplemental Award

Learn more about PHA’s 2015 funding opportunities, including eligibility criteria and deadlines.

World PH Day... and Beyond

Today’s blog was co-written by PHA staffers Megan Mallory and Renee Hockaday. They make the point that awareness doesn’t begin and end on World PH Day. It is an everyday necessity if we are to succeed in our efforts to achieve better lives for PH patients and all those living and working with this disease.

Yesterday, on May 5, pulmonary hypertension patients and their loved ones asked their social media friends around the world to join their fight against a life-threatening disease too often dismissed as asthma. Our PH community did this to mark World Pulmonary Hypertension Day, and we joined in a global effort to educate people about PH and bring awareness to this disease.

The fight for awareness does not end after one day. If we are to succeed, awareness-building must continue today and every day. If you missed out on yesterday’s social media blitz, we ask you to join this awareness movement today.

We have designed a World PH Day celebration social media pin with the message, “PH: A disease of many stripes,” to symbolize the diagnostic challenges and how PH comes in different forms, sometimes without a known cause and in other cases, associated with other diseases. Please share this pin with your social media followers to lead them to PHAssociation.org to learn more about PH, find healthcare resources and/or make an online donation.

Please post this social media pin with the following messages on your website, Facebook, Twitter and other social media pages. Or if you want, create a message of your own. Here are our suggested messages:

Facebook:
Pulmonary hypertension may look like asthma. But on average, the survival rate for those untreated is 2.8 years. For World PH Day, share this message and World PH Day pin with 5 people you love. http://owl.li/LVTdB

Twitter:
World PH Day: the other May 5 celebration. http://owl.li/LVTdB @PHAssociation #PHAWorldPHDay #ILovePHA #PHAssociation

Did you know?

Yesterday also marked the beginning of PHA’s Days of Unity. Days of Unity are events and fundraisers hosted by individuals and organizations to raise money to fight PH. The events range from small walks hosted by PH patients to an endurance bike race fundraising effort led by Team PHenomenal Hope, which raised nearly $117,000 for PHA as participants in the endurance bike event Race Across America in 2014. Our 2015 Days of Unity events will conclude on June 20 after Team PHenomenal Hope completes its 860-mile Race Across the West from Oceanside, Calif., to Durango, Colo. Learn more and get involved

An Unexpected Gift for Support Group Leaders

In honor of World PH Day, Pulmonary Hypertension Association support groups got a special delivery. Gerry Fischer, president of PHA Europe, donated books written by his daughter, PH patient Maleen Fischer, to support group leaders. Maleen's book,“Hope Springs Eternal,” is about her PHight with PH. On behalf of all of PHA support group leaders and members, PHA thanks Gerry and Maleen for this thoughtful donation!