Vision is perhaps the single most important
possession of leaders, especially those who seek to change and improve the
future of its people. Saturday was a day of discovery in Puerto Rico for the
hemophilia community as the Asociación Puertoriqueña
de Hemofilia (APH) met as a team to work on fundamentals of leadership, such as
vision.

I was honored to be the facilitator
for such a day. I have a workshop called “Reach the Summit,” which I have given
in other countries to help jumpstart hemophilia nonprofits in their bid to
change hemophilia healthcare in their countries. It’s normally a three-day
workshop, and that’s just one workshop! It could easily be two to three
workshops, too. But we had just one day for now.

My visit in April was to assess
hemophilia care in Puerto Rico, our “51st” state, and to see if
there were ways we can help. The Hispanic community in the States is our
largest minority population, and cities like Boston, where I am, have a huge
Puerto Rican (and Dominican) population. My own assistant and colleague,
Zoraida Rosado, who accompanied me, is from Puerto Rico. So Puerto Rico is
never far from my mind. I followed up my April trip by writing a feature
article in PEN (see our Archives to download!), which outlined the task head of
APH to improve care. What naturally came from that was the idea of a workshop
to jumpstart the new direction of APH.

But you can’t go in a new
direction if you don’t know where you are going, and you can’t know where you
are going unless you have a vision of where. I compare this process to mountain
climbing, which I have now actually done in climbing Mt. Kilimanjaro last August.
You need to know what your purpose is, your summit, where you will end up. You
need a map (strategy), proper gear (resources), a compass (values), a
contingency plan (flexibility), fellow-mountain climbers and porters (team),
and a mountain guide (coach).

Our team attending that day
consisted of parents and patients with hemophilia who have been running the
APH, and representatives from industry, including Novo Nordisk, Baxter and
Bayer, and a local specialty pharmacy, Axium.

The day started by examining
limiting beliefs, because leadership requires that we break through these to
begin our climb. I recalled my limiting beliefs before climbing Kili: I’m too
old, I’m not in good shape. We did some fun exercises that demonstrated how we
are all shaped by childhood and our daily routine to think a certain way. We
may need to break out of the “box” to find solutions to hemophilia care in PR.

Next, we discussed principles of leadership
and each person in the room shared who his or her leadership model: who is the
one person from history or even currently, personally, professionally or
spiritually, who we look up to as a leaders, and why?

Then, we tackled principles of
vision, but only briefly. This was a shame, because almost all leadership
workshops start with creating a vision. From the vision, all things flow. There
just wasn’t time as we wanted to end the day with concrete goals. So we then
moved on to mission statement, which the APH already had. But it wasn’t a clear
one. We spent an hour taking it apart, examining it, challenging it and finally
the group reassembled, and put it back together, with half the words and five
times the power!

We worked through lunch on goals
under five headings: organizational (including board development); medical;
communication; lobbying; and patient programs. The goals were easy! We all knew
what needed to be done. What was fun about this? Seeing how one goal couldn’t
be reached unless another goal was first accomplished. The group naturally prioritized
their goal. Goal #1? Get a phone number for the association! #2? Get business
cards for NHF’s meeting in Orlando in November!

The group was so excited about
the new mission that they wanted very much to return to vision. This means we
had to scrap the strategy session. But momentum was high and momentum is the
fuel, the passion for change! I couldn’t let that go. Three participants had
already come to me quietly and individually and said, “I know what the vision
should be.” That’s the kind of leaders we look for.

So we spent the last session
retuning to vision, and wow, did creative sparks fly! I never saw a group pull together
a vision so quickly, so coherently, so beautifully. Three people offered vision
statements, and they were all quite similar. With a little reworking, shaping,
molding, the APH had a new vision. This vision would serve as a beacon, to
guide them through the coming years as they navigate rocks, hills, bad weather
on their way to the healthcare summit.

I was very proud to serve these
remarkable and dedicated people. I hope we are paving the way for the APH to
soon join NHF as a chapter, and start opening the doors of communication to a
stronger community and better medical care on the island. Care there is very
good, but there is lots of room for improvement. And together as a team, the APH
will serve as effective advocates—in turn, “mountain guides”— for all Puerto
Rican patients with bleeding disorders.

Thanks to all who attended, and especially
to Baxter Healthcare which sponsored the room and refreshments.

Una
comunidad de personas con hemofilia y profesionales de la salud abogando en pos
de sus derechos a un mejor cuidado médico de exelencia.

A community
of people with hemophilia and healthcare professionals advocating in pursuit of
their rights for an excellent medical care.