Monday, December 31, 2012

As we begin 2013…an important new direction for PHA

Carl Hicks, Bette Perez, Lisa Beth Gansberg, Gina Parziale, Rino Aldrighetti
Almost exactly one year ago, I began an important new conversation with PHA’s Board of Trustees.

At that time, PHA was able to look back on significant and almost uninterrupted growth during the past dozen years.  Looking forward, however, we anticipated that, without changes, this growth could be at risk.
Let me start by explaining why growth is important in our disease state and the risks we face and then I will talk about our plans for the future.

PHA has always known that it is no less complex or expensive to solve the problems of a disease state like PH, with our 20,000 to 30,000 diagnosed patients in the U.S., than it is to solve the problems of a disease like diabetes (24,000,000 diagnosed in the U.S.) or arthritis (73,000,000).  In the face of that reality, we have built a system that has allowed us the funding to do what we need to do.  That system has been built upon our members and friends who give very generously, special events organized at the grass roots level, external givers like foundations and industry.
Industry giving has been significant and there is a reason for their strong support.  PH – which had no treatments before 1996 and only one (Flolan) until 2001 – has as many or more treatments today than all but two of the 7,000 rare diseases identified in the U.S. by the U.S. government.  Here is that list as of June 2011:
Growth failure….….8

Having said that, industry giving functions parallel to their business cycle in a disease.  As their products mature and move toward generic availability, the good news is that pricing will go down…we are already seeing that with Revatio.  However, the other side of the coin is that we anticipate this segment of PHA’s funding will begin to recede. 
Even if industry funding was to hold steady or increase – and, with new products in the pipeline, that might well happen – PHA still needs to develop alternate funding.  We have always been driven to do all that needs to be done and never to be limited by the size of our patient population.  As we have grown, we have been asked to – and strive to – do more:

·       to coordinate, train and assist a support group network that will shortly include over 250 groups

·       to organize and provide essential online and face to face medical education for a medical community that is rapidly growing

·       to develop and assist patient and caregiver groups for segments of our community with specific needs and interests

·       to increase support for adult and pediatric PH research within our five research programs

·       to support the development of a system of standards that will result in defined and accredited PH Centers of Care to improve the quality of clinical treatment for patients

·       to rapidly expand our early diagnosis campaign, Sometimes It’s PH, toward our goal of reducing the time from onset of symptoms to point of diagnosis over the next five years

·       and so much more…to see, all you have to do is look at PHA’s three primary websites,, and 
All this is exciting opportunity to make things better for our community…but it also requires significant resources. 

So, that’s why continuing growth is important and those are the risks we face.  Now let’s talk about how PHA is responding.
At PHA’s board meeting in early 2012, I talked to our board about the same issues I am writing about in this blog and we began a discussion to ensure our sustainability…an eight month process of search and discovery.  Our goal has been to find and build a structure that will keep PHA strong and independent in the coming years to do all the things we must do. Our timetable was to make a decision and establish our new structure for this goal by January 1, 2013.
As I post this blog on the last day of 2012, it was quite a trek but we have met that goal.
In the early months of 2012, board and staff began to investigate and discuss different options.  For various reasons, each was rejected as not being capable of fully meeting our needs.
Then, on July 17, we had a full day meeting with the leadership of the Cystic Fibrosis Foundation. 
Our history went back a long way with CFF.  A year or so after I began work with PHA as its first staff person, board member Jack Stibbs and I had a number of meetings with Bob Dresing, who was one of the founders and who had been CFF’s first CEO.  More recently, our Scientific Research Council had been working closely with Dr. Bruce Marshall, their VP of Clinical Affairs about their development of Centers of Excellence.
At our July meeting, we brought in 5 board members with business and medical background and 5 staff.  We went through a number of issues with their long-time CEO Bob Beall and COO, Rich Mattingly and a number of others. 
During follow-up discussions, it was clear that we had unanimous agreement that their Chapter structure fit both our mission and goals.
 We had a target.  In the end though, it’s always about people.  To maximize our chances of success, we now needed to staff that target…and staff it we did.
On October 1, Carl Hicks became the first member in PHA’s history to move from a board position to a staff position.  Following his resignation from the board, we hired Carl to fill a newly created position, Vice President for Field Operations…certainly not because he was a former board Chair but because – with his military and corporate leadership experience at the highest levels – Carl is clearly the right person for this job.
Our task is to create new funding streams to support the work described above and the work to come.  In the first year, the plan we developed calls for three such Chapter offices to be established and brought to significant profitability within the first 12 months.
Carl has been working rapidly since early October to build this new support element for our structure.  By November he had completed the process of city selection for our first three Chapters.  Once New York, Chicago and San Francisco had been chosen, over 100 resumes were collected and, following many phone screenings among the candidate pool, he began to travel to each of the cities.  In New York, he and Joanne Sperando Schmidt – a support group leader, event organizer and former board member – completed nine first round interviews in a day.  He did eight interviews the next day in Chicago with Liz Rossi – who had organized some of PHA’s earliest large events.  He repeated the process in the San Francisco area with participation by PHA board member Rita Orth.
By late November, Carl and I began second round interviews at the PHA office.  In early December, we had completed hiring for PHA’s first three Chapter Executive Directors:
·       New York: Gina Parziale has well over a decade of rapidly increasing responsibility among New York area non-profits, serving as the District Director of the Muscular Dystrophy Association and the Division Vice President of the American Liver Foundation (New York/New Jersey).

·       Chicago: Lisa Beth Gansberg has been developing fundraising events for over a decade and a half.  Her work has benefited organizations such as the Chicago Chapter of the Arthritis Foundation, the National Kidney Foundation of Illinois, the National Kidney Foundation of Illinois and the National ORT.

·       San Francisco: Bette Perez has been leading non-profits in the Bay area for over two decades with strong experience in special events and major giving.  These include St. Vincent DePaul Housing and United Way of Sonoma-Mendocino-Lake.  (Bette set a record after being hired, securing the first major gift through the new Chapter structure within an hour of accepting her position!)
On December 18, we began a three and a half day training for our three executive directors at PHA’s office in Silver Spring, Maryland. Besides learning about PH and PHA…
·       we analyzed their needs so that the national office is positioned to provide effective support

·       they connected with each other to form a strong team

·       they developed their budgets

·       funding goals were established

·       advertising was placed (and hiring has begun) for what will soon be three person field offices in each of the cities
We have hit our first two goals.  Our first field offices have been established with strong leadership.  Our national office is positioned to provide necessary support for the field structure’s success.  Now, in the new year, the field offices will begin to raise funds as a key component of the funding strategy that will allow PHA to continue to respond to our community’s needs.  Our third goal is to bring each of the Chapters to positive income flow by August.  Following that milestone, we will continue to expand the field structure annually
So, as we close one year and open another, I present this to you as a window to future opportunity for our community. 
As I wrote above, it is no less expensive to solve the issues of a rare disease than one with millions of patients.  We cannot be limited by our numbers.  We must always find ways to exceed them. If we do not fight for this community, if we do not work to defeat this disease, who will?
We have a plan.  We have a team,  We have a worthy and critical cause.
May 2013 be a year of new breakthroughs and realized opportunity.


  1. Congratulations to PHA for starting this new chapter in your history!

  2. Congrats PHA for getting one of the best to run your NYC office! I bet you got the best forSan Fran and Chi-town too!

  3. This development seems to be very forward-looking for the sustaned strength of our orgnization. You have our continued support.

  4. Congratulations in opening the new offices. Thank you for your work in this development of PHA offices. It is so needed. Please offer training and education in this field to the doctors already in practice. I went to my primary care and she didn't know a thing about PH. She said I haven't had any patient die of it. Thanks again.

  5. Congratulations on your new organization!

    Education for members of the medical community is so important, especially ER personnel. Patients receiving Flolan or Veletri therapy need immediate attention when there are pump, IV or central line problems.