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.

4 comments:

  1. Thank you for the work you do...you are a lifeline to those with PHA!

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  2. I am just so THANKFUL you are there for us PHers....You have no idea how much we depend on you and the info you share !!...Thank You !! .... Jacqui Godfrey N.MN

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  3. There is a lot to be grateful for as I am finding out. Newly diagnosed at age 66 makes me wish more progress had been made over the last 15 to 20 years so we could be more hopeful about our prognosis.

    Thank you so much for all of the information and hoping for a quicker path to a cure,

    Sheila

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  4. I'm so grateful for the information I find in your newsletters and announcements, especially the reports on new treatments. They always bring me hope that the future may not be as grim as I feared when I was diagnosed 1 1/2 years ago. Keep up the good work!!

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