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.

Around the world in 30 days ... and still going!

As I write this note, three weeks and three days from PHA’s 2014 International PH Conference and Scientific Sessions, I find myself thinking about what Conference years were and what they are now.

It used to be that in even-numbered years (Conference years), volunteers and staff were completely re-directed to manage the thousands of details that make for a successful Conference.

That was then. Today is different.

We are working on so many essential projects beyond Conference that the good of the community requires us to strive for excellence in all.

Here is a snapshot of the 30 days (April 27 to May 26) before I wrote this blog. I hope it will give you a picture of what is being done to accelerate the fight against PH.

PHA opened this 30-day period with news that we had received another four-star rating by Charity Navigator. This is the eleventh time PHA has been rated by the largest online nonprofit reviewer and the eleventh four-star rating they have given this organization. They tell us less that 1 percent of the thousands of charities they rate have received this honor.

As many of you know, one of our goals at PHA is to weave together patients, families and medical professionals across the globe to make sure no good idea is kept in shadows. That concept of cooperation and collaboration has led to the growth of national PH associations with 68 functioning today, up from three in 2000. On May 14, in the context of World PH Day, I blogged about our weeklong trip to Muscat, Oman, and Beijing, China (April 29 – May 6). During that same time, we participated in a Latin America-wide conference of PH leaders. These trips are about much more than visits. They are about strengthening global unity in the fight against PH. For example, one day before the Oman/China trip, we had an April 27 international conference call to agree on the creation of a website that will help PH association leaders more easily find and use resources from all of the PH associations … bringing us one step closer to universally shared best practices for the acceleration of the movement’s growth. This call was an outgrowth of two years of meetings that also resulted in the creation of coordinated PH anxiety and depression studies in Asia, Europe and the U.S.

While I was working with our Chinese PH partners, marking World PH Day on May 5, there was tremendous activity in North America. PHA continues to manage the World PH Day website, which we created last year. Thanks to our friends at PHA Canada, Niagara Falls was lit purple on May 5 in recognition of World PH Day, as were the Peace bridge between Buffalo, New York, and Fort Erie, Ontario, and the CN Tower in Toronto (among other notable sites). In the U.S., besides a number of events, we continued to focus on building PHA’s media blitz, which I blogged about on April 30.

PHA’s media campaign continued to grow rapidly throughout May, with Queen Latifah, Michael Buble, Florence Henderson, (see May 2 entries about Lucas), Laura Dern, Courtney Cox and Diane Ladd helping to get the word out. Reports kept coming in all month about networks playing our public service announcements (PSAs), including in prime time on American Idol. New networks (both English and Spanish) were added to the list agreeing to play our PSAs. Our web pages training those in our community on how to maximize local air play are being visited heavily … as are the web pages for those who are becoming aware of PH by seeing the PSAs on TV or hearing them on the radio.

We spent May refining our formula for success in getting TV and radio play. According to the Benton Foundation, there are 1,744 full-power TV stations in the U.S. Adding low-power and UHF and VHF commercial stations, the number grows to 5,720. There are 14,728 full-power radio stations in the U.S. This month, we had our PSAs sent to the inbox of 4,000 TV stations and the 10,000 most popular radio stations. Through a few easy-to-make phone calls, you can make sure those PSAs are opened by the stations and played. We have never had an opportunity for awareness like this before and, as always, success depends on you and those you can help recruit. You are our only chance to reach in to the community where you live!

On May 8, three of us met PHA co-founders (and sisters) Judy Simpson and Pat Paton at the National Organization for Rare Disorders Gala in Washington, D.C. Pat and Judy (pictured left) were being honored as part of NORD’s Portraits of Courage program. Actelion and Bayer had been selected by NORD for their Innovative Orphan Products Award, with Pat Paton making the presentation to Bayer and me to Actelion.

On May 14, we filled the room at the FDA/PAH patient meeting at FDA headquarters in White Oak, Md. It was a great discussion with the goal of including patient input in the FDA decision-making process. Meetings for only 16 diseases have been scheduled despite requests from hundreds of disease organizations. We feel fortunate to have been able to help make this meeting take place. The webcast of the hearing has already been posted from the FDA PAH Public Hearing page in Part 1 and Part 2.

As we move closer to the launch of PHA’s PH Care Centers accreditation program, the pace of review and final development is accelerating. During the week of May 12, we had four PHCC Committee meetings to discuss the six pilot accreditations that have recently taken place, make necessary adjustments and prepare for the upcoming launch. Much education about the program has already taken place and more is coming.

Between May 16 and 20 – with several other staff – I was at the American Thoracic Society meeting in San Diego. This is the annual meeting attended by more than 16, 000 pulmonologists. When I attended my first ATS meeting in 1999, there was very little about PH … two sessions with attendance at one being 35, the other 50. Now it is one of the most discussed issues at the Conference, with thousands participating in PH sessions.

While at ATS, we had the opportunity to host a three-hour question-and-answer session for patients and their families. Drs. Ron Oudiz, Nick Kim, Jeff Sager and Nurse Practitioner Wendy Hill delivered a great interactive program. PHA’s exhibit was heavily visited with a great deal of interest in both our medical journal – Advances in Pulmonary Hypertension – and the new PH Care Centers accreditation program. Each of us had a number of other responsibilities at the Conference. With PHA's Michael Gray and Briana Rivas-Morello involved in a number of medical committee meetings (Briana also had primary responsibility for the patient question-and-answer program). PHA's Jessica Armstrong held committee meetings and developed new connections for our Early Diagnosis Campaign. She returned with several endorsements and several more pending. Debbie Castro’s schedule was filled as the newly elected Chair-elect of ATS’ Patient Advisory Roundtable (PAR). In two years when she becomes PAR Chair, Debbie will have a seat on the ATS Board. Dr. John Newman, a former PHA Scientific Leadership Council Chair, received the ATS Educator Award. Dr. Val McLaughlin, our current Board Chair received the PAR Award for Excellence – the second time in two years that it has been presented to a PH physician. (Dr. Mike McGoon received the award last year.)

Also, while at the American Thoracic Conference, we learned that we are ATS’ largest research partner … larger than industry or other nonprofits. This speaks to our goal of and success at leveraging our donor’s research support to bring in additional money to support PH research.

There’s something else special about the ATS Conference. Coming as it does every second year a month before PHA’s Conference, it is a time when we are usually discussing options for our Conference’s room blocks, remaining scholarship availability and many other issues. This year was no exception but, fortunately, did not distract too badly from my various meetings with funders, physicians and nonprofit partners. It is a place where we get to connect the dots to accelerate our forward motion.

So, that is a sketch of the past 30 days through one PHA staffer’s experiences. It doesn’t include those of our other employees and volunteers both in the national office and in our Chapter offices. It doesn’t include the glue that keeps our structure together and well governed, monthly meetings with PHA’s executive committee and finance committee, among others. It doesn’t include the time invested by staff and volunteers in support groups, the development and management of our research programs, our advocacy activities, patient and medical education, the creation of a new feedback system related to specialty pharmacies … and a great deal more.

We are truly a busy organization. For those who understand the importance of what we do, for those who can handle the pace, we wouldn’t have it any other way.

Charity Navigator says...and says again

In 2003, PHA held our first PH Professional Network Symposium.  Our medical journal was one year old.  Our support group network hovered around 50 groups. And Charity Navigator, the U.S.'s most highly regarded charity evaluator, rated PHA for the first time.

A lot has happened since then but one thing has stayed the same - PHA's standing with Charity Navigator has remained the same.

Today, we received our tenth rating...and for the tenth consecutive year, it was the highest rating possible, four stars

 

This year year PHA was scored at 69.03 out of a possible 70 points.  Only 1% of the charities Charity Navigator rates have received 10 consecutive four star ratings. 

Take a look at this and other awards received byPHA and, if you're moved to help PHA continue to move forward, feel free to donate or join.

 

Thank you for all you do to to keep PHA strong in the fight against pulmonary hypertension!

 

 

7 Years in a Row...

While blogging a couple of days ago about the check PHA received from the law firms involved in the nifedipine lawsuit, I started thinking about some of the things they must have seen as they made their giving decision.

For the past seven years, there has been a little box at the bottom of PHA's web pages showing a 4-Star rating from Charity Navigator, the internet's largest and most highly regarded evaluator of non-profit performance.  Their most recent evaluation came in May. Clicking on that box brings you to a lot more information about that rating and what it means.

In the same place, we also carry our Better Business Bureau Accredited Charity designation, showing that PHA meets all 20 of that evaluating organization's standards.

It's good to know that evaluations like these draw attention and interest...and apparently can have quite an impact.