Wednesday, June 17, 2015

Protecting Yourself from Summertime Pests

Today’s guest blog post is different from those we usually present, but it is very appropriate for this time of year. Many thanks to Donneea Edwards-Moore, RN, MSN, the Pulmonary Hypertension Nurse Coordinator at the University of Chicago Medical Center, for providing these summertime tips for pulmonary hypertension patients.

While most people look forward to summertime fun, the summer months can bring about pesky insects that can ruin a good time. Enjoyable weather, backyard cookouts, and swimming in the pool can turn into battle of the insects.

Mosquitoes, stinging insects (bees, wasps and hornets), and ticks are just a few insects that prey on people for their own satisfaction. No one wants to be a buffet for these bloodsucking insects; they can be nuisances and can cause mild to severe allergic reactions in some people. These allergic reactions can be fatal to PH patients, causing anaphylactic shock and the exacerbation of symptoms. There are measures PH patients can take to protect themselves from these pests and prevent themselves from getting bitten and stung.

Mosquitoes (West Nile Virus)

According to the Center for Disease Control (CDC), almost 40,000 people in the U.S. have been reported with West Nile virus disease since 1999, and of those, more than 17,000 have been seriously ill.
  • Use insect repellents recommended by the Environmental Protection Agency (EPA) and the CDC that contain DEET, picaridin, IR3535 or plant-based oil of lemon eucalyptus.
  • Use alternative methods such as Citronella-infused oils, Off!, or Skin-so-soft (Avon).
  • Wear long sleeve shirts and pants to prevent exposure.
  • Limit your time outdoors between dusk and dawn as they tend to bite during these hours.
  • Support your local community mosquito control programs by checking with your local health department to get more information on mosquito control.

Bees, Wasps, and Hornets

Thousands of people are stung by insects each year, and as many as 90–100 people in the United States die as a result of allergic reactions. This number may be under reported as deaths may be mistakenly diagnosed as heart attacks or sunstrokes or may be attributed to other causes.
  • Avoid fragrances (lotions, hair spray) as they are attracted to sweet scents.
  • Don’t wear bright colors, particularly floral patterns, as this attracts them more.
  • Be careful not to leave food and drinks out and uncovered.
  • Hold still as rapid movement startles bees and encourages them to sting. Instead, try blowing on the bee to encourage him to move on.
  • Wear clothing to cover as much of the body as possible.
  • Wear a hat as bees are in a heightened state of readiness when they are close to hair or fur.

Ticks (Lyme Disease)

According to the CDC, more than 25,000 cases of Lyme disease among Americans will be reported this year.
  • Avoid wooded or grassy areas with high moisture and humidity.
  • Use a repellent with DEET (on skin or clothing) or permethrin (on clothing and gear only).
  • Wear a hat and light-colored clothing, including long-sleeved shirts and long pants tucked into boots or socks.
  • Perform Tick checks on the entire body, and if found, remove tick quickly with tweezers.

If any of the following symptoms appear after being bitten or stung, seek immediate medical attention for treatment:
  • Difficulty breathing
  • Rapid heart rate
  • Hives
  • Swelling to face, lips, tongue
  • Dizziness
  • Restlessness and anxiety

Learn more about how to prepare for summertime fun in the section Warm Weather and PH on PHA's website. You will find tips for staying cool and a link to an informative webinar.

Wednesday, June 3, 2015

What Does the American Thoracic Society International Conference Mean to PH Patients?

This week’s guest blog is from Debbie Drell (formerly Debbie Castro). Debbie is PHA’s Senior Director of Volunteer Services and also serves as the Vice-Chair of the American Thoracic Society’s Patient Advisory Roundtable (PAR). PHA’s Board and Scientific Leadership Council have been interlocked over the years through medical leadership positions on the American Thoracic Society’s Board and Assemblies. Next year, when Debbie rises to PAR Chair, she will also serve on ATS’s Board, marking the first time we have had a PHA staff person and caregiver on that board. She will offer an important voice at ATS, America’s leading association for pulmonologists. We congratulate her and welcome the opportunity.

I hope you enjoy this blog, and Debbie’s take on this important medical meeting.

PHA prides itself on bringing together medical professionals and the patient community under one organization and one mission. As a PHA staff member who works primarily with patients and caregivers on support groups, I am excited when the opportunity arises for me to participate in a medical conference and bring a patient and community perspective to the meeting.

Last month, I had a lot of questions mulling around in my mind as I prepared to attend the American Thoracic Society International Conference in Denver:

  • How do patients benefit from conferences solely organized for medical professionals? 
  • What takes place during these medical conferences and how does the networking and education trickle down to the patients they serve?

I wasn’t the only staff there, and I’ve been to medical conferences before. I usually represent PHA’s medical professional serving programs and stand at our organizational booth in an expansive (and expensive!) exhibit hall; but this time, I went “beyond the booth” and stepped into medical talks, networking meetings and sessions to experience the medical professional perspectives at the conferences.

I shouldn’t be here! I don’t have an MD or PhD on my name badge. I felt like a spy!

Debbie (left) and Kerri
But the ATS conference actually has patient-serving programs, too. In fact, they are so dedicated to the patient population, they have a special advisory board packed with leaders from organizations serving disease populations that share the ATS mission for pulmonary, critical care and sleep disorders. Organization representatives span from well-known diseases such as asthma to rarer diseases such as scleroderma, pulmonary fibrosis and – you guessed it – PH! That photo on the right is me with my counterpart (Patient Programs Director) at the Scleroderma Foundation. Kerri Connelly is super dedicated and her mom had PH and scleroderma.

This advisory board is called the Patient Advisory Roundtable (PAR, for short) and it was founded, in part, by a PHA founder! Judy Simpson was at the PHA “kitchen table” – a sister of a patient, but also a nurse. She brought the medical lens and perspective at PHA’s founding which really fomented PHA’s foundation of medical and patient unity under “one umbrella.” Many disease nonprofit organizations are patient-centered and their medical counterparts are separate entities, but that's not the case with PHA.

So it was natural and obvious for her to encourage the ATS to bring patients together, and both she and Rino were at “the other table” in Rockville, Md., when PAR was founded over a decade ago.

I’m a member of their PAR group and can tell you that they integrate patient perspectives and community voices in so much of what they do. At this conference, they hosted a day-long patient education event called “Meet the Experts,” which bridged a range of diseases with universal talks on topics such as integrative health, air quality, clinical research, pulmonary rehabilitation, genetics and environmental concerns. After two hours of all the patients coming together for these talks, the groups split up, and PHA hosted a panel talk just for PH patients and their families. More than 260 were registered to attend the overall event, and 50 PH patients and caregivers participated in PHA’s special PH session that featured PH specialists:

The PH session had the largest attendance of all of the PAR member disease-specific sessions offered.

Obviously, patients gained medical knowledge and support by connecting with other patients at this special meeting. But what about the general medical conference? More than 10,000 pulmonologists gathered in Denver.

How did PHA interact with them? How does this affect patients (if at all)?

First, we took advantage of the fact that a critical mass of PH doctors and nurses would be at this meeting – so we held special meetings for PHA medical leaders who were in attendance:

  • PHA brought together the medical professionals involved in the editorial committee for Advances in PH, our quarterly medical journal. We are so much more effective with time during face-to-face meetings! 
  • The many medical professionals who lead PHA’s Early Diagnosis Campaign came together as a committee and discussed how to leverage ATS and other networks to better raise awareness and educate medical professionals about PH. Among the highlights: the Early Diagnosis Subcommittee for Disadvantaged Patient Populations is currently in the process of submitting proposals for a White Paper. This subcommittee was created at last year’s Early Diagnosis Campaign all-committee meeting at PHA’s International PH Conference and has grown rapidly over the course of the past year.
  • PHA’s President Rino Aldrighetti, PHA’s Medical Services Sr. Director Michael Patrick Gray, and PHA medical leadership met with the International Society for Heart and Lung Transplantation (ISHLT) leadership to discuss increased partnerships and the creation of a PH Symposium at their next meeting. They also met with medical leadership of PPHNET, a group of PH pediatricians, to discuss ways we can work closer together to achieve our common goals.

In addition, PHA and PH were highlighted during the ATS conference:

  • …in an award ceremony! PHA’s Scientific Leadership Council Distinguished Advisor, Dr. David Badesch, won the William J. Martin II Award, and his excellence in contribution and service to patients was highlighted at multiple award ceremonies. 

As you can see from this very partial overview, these meetings help us increase medical professional awareness and education around PH, and this will ultimately, over the span of years, contribute to a shorter duration from symptoms to diagnosis and reduce the time patients spend in the cycle of misdiagnoses.

At these conferences, the results of research are often presented as well as significant reports of ongoing research.

PH was discussed in many sessions, including a presentation on the results of a clinical trial comparing initial combination therapy with ambrisentan (Letairis) and tadalafil (Cialis) versus monotherapy for patients with pulmonary arterial hypertension.

After all was said and done, I still went back for some “booth duty” and enjoyed seeing doctors donate to PHA through participation in a game show at Bayer’s booth and through a photo booth at Actelion’s booth.

Wednesday, May 27, 2015

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

Wednesday, May 20, 2015

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, contact 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).

Wednesday, May 13, 2015

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:

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

Wednesday, May 6, 2015

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 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:

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.

World PH Day: the other May 5 celebration. @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!

Wednesday, April 22, 2015

4 Stars... Building Longer, Better Lives

Shortly after I came to PHA as its first employee in 1999, I was invited to attend an annual meeting that the National Heart, Lung, and Blood Institute of the National Institutes of Health organized for nonprofit organizations in NHLBI’s area of medical interest.

I was pretty excited to attend. It was my first chance to connect with other disease associations. I was hoping to learn something from them … and I did. During the breakout sessions, conversation was dominated by one disease that had four separate organizations. They were all shouting at each other and not accomplishing much. To my knowledge, that’s still the case today.

The lesson of the day for me was that PHA needed to be built as much more than an organization. It needed to be a community, a community that reaches across all constituencies whether they be patient, caregiver or medical. It was important that PHA be managed to its mission by people who could work in solidarity across the many issues that will make life better for PH patients. Fortunately, that lesson was consistent with our founders’ vision.

Does that approach of solidarity in community-building work? Well, there’s a lot that could be written about what PHA has accomplished over the years, but that will be for other blogs. This one is about people looking at this organization from the outside.

According to its Wikipedia profile, Charity Navigator was launched in the spring of 2001, with the mission of helping "donors make informed giving decisions and enabling well-run charities to demonstrate their commitment to proper stewardship" of donor dollars. Initially, Charity Navigator provided financial ratings for 1,100 charities. Charity Navigator currently evaluates more than 5,400 charities in the United States.

Due to their comprehensive review process, Charity Navigator quickly emerged as the most respected of the nonprofit evaluators. PHA became one of those evaluated charities in January of 2004, receiving their highest rating – 4 stars.

In April of this year, PHA received our 12th consecutive 4-star rating. As Ken Berger, Charity Navigator’s CEO, writes, “Less than 1% of the charities we rate have received at least 12 consecutive 4-star ratings, indicating that Pulmonary Hypertension Association outperforms most other charities in America….”

Our score this year, at 98.55 (out of 100), was our third highest ever.

PHA has also been recognized for excellence by many other organizations – including the Better Business Bureau, GuideStar Exchange, Independent Charities of America, Great Nonprofits, National Organization for Rare Disorders (NORD) and the Center for Nonprofit Advancement – based on a variety of standards.

We have accepted these awards as the validation of a system that is essential to success in a small rare disease state. That is, we move forward because of the strength and support of a single and powerful community: people like you, bringing the “power of one” to the table for the good of many.