“The only true voyage of discovery consists not in seeking new landscapes, but in having new eyes”Marcel Proust
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. 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.
Laurie presents leadership principles
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.
Johnny Márques and Jésus (Novo Nordisk) examine goals
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!
Tamara writes the new vision statement
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.
¡Felicitaciones!
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.
Visión
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.
You may have heard that the hemophilia community is a bit worried about developing leaders. Our generation is getting “old,” and has fought our many battles, and continue to fight on the insurance front. We need young people with talent, ambition, compassion and vision to carry the torch in the future.
But are we victims of our own success?
We’ve made life good for the new generation of kids with hemophilia, and as expected, they are having good lives–and disappearing from our radar screen. We need them to come back, to pitch in, to help, to lead.
To address this, Bayer developed a unique program in our community to train young people to think about careers in hemophilia, or at the very least, to give back through volunteering. Bayer HealthCare offers the Bayer Hemophilia Leadership Development Program (BHLDP), and expanded it this year by adding a community element to the internship experience. The 2012 interns selected to participate in this prestigious program will spend five weeks of the eight-week program at a local hemophilia organization.
The company is currently seeking applicants who are attending college and have been touched by hemophilia. Those interested have until Monday, March 12th to apply for the program, which runs from June 18th-August 9th. Participating interns will engage in leadership training, hands on business projects, marketing and communications strategies, and help support the local hemophilia community. Additional details and the application can be found at www.livingbeyondhemophilia.com/intern.
Of the many organizations that applied to participate, four chapters were chosen to mentor and manage an intern. They are the Arizona Hemophilia Association, Bleeding Disorders Alliance Illinois, Hemophilia Foundation of Upstate New York – Rochester and Texas Central Hemophilia Association.
The 2012 program begins with a two-week orientation at Bayer HealthCare’s U.S. headquarters in Wayne, NJ, where the interns will receive training on communications, problem solving and leadership skills as well as work with people in a number of departments to gain insights into how various parts of the company operate. Interns will spend the following five weeks at the selected hemophilia organization, where they will gain first-hand knowledge about the work done on a local level and engage in projects building on the skills developed earlier in the program. During the final week at Bayer, the interns will report on their experience and present a project developed with their local chapter.
Bayer established the Hemophilia Leadership Development Program in 2007. Since that time, many program participants have become more active hemophilia advocates and have gone on to careers serving the community, government and industry.
This is a fantastic opportunity. If you know of a young person with hemophilia who has leadership potential, please have them apply today!
Great Book I Just Read The Killer of Little Shepherds: A True Crime Story and the Birth of Forensic Science by Douglas Starr (Kindle edition)
Starr never fails to engage. From 1894 until 1897 in the countryside of France, Joseph Vacher, a vagabond and discharged military enlistee, began a bizarre killing spree, from young women to little shepherd boys. Dispatching his victims rapidly, mutilating or violating them, and moving on immediately, he became a killing machine that terrorized France and baffled police. Forensic science was nearly nonexistent, and police imprisoned innocent people based on hearsay. Meanwhile, Dr. Alexandre Lacassagne, France’s leading expert in legal medicine and professor at the University of Lyon, dedicated himself to the case and in the process advanced forensic science. Ultimately, this became one of the first cases of determining what is legal insanity, as Vacher, once apprehended, became his own counsel in effect and pushed to be declared insane. A battle ensues between Vacher and Lacassagne, which would have repercussions for decades to come. Fantastic story, well written, and enlightening. Four/five stars.
Author and leadership guru John Maxwell writes, “Whatever the question, the answer is leadership.”
Here’s a great program and a great opportunity for some qualified young people in the hemophilia community: a leadership-training program that pays. The Bayer Hemophilia Leadership Development Program is a unique opportunity to learn about hemophilia from an industry point-of-view by serving as an intern at Bayer, makers of Kogenate FS.
The internship is on location at headquarters in Wayne, New Jersey. Participants will be paid $15 an hour. During the internship, participants sharpen leadership skills in real-world scenarios that enrich the hemophilia community. Internship modules include:
▪ leadership training classes to develop presentation skills, learn about effective project management, and discover successful time management techniques. ▪ a personal challenge project which allows interns to apply their new skills to design and create a project ▪ a visit to the Bayer manufacturing facility in Berkeley, California ▪ a meeting with healthcare public policy professionals to see how effective advocacy relations impact legislative decisions • an exploration of marketing and communications strategies
This is an incredible opportunity. I know quite a few of past participants and they have all greatly enjoyed their experience, and learned a lot.
Applications are due by Monday, March 14, 2011. All applicants should be college students (sophomore through senior year), with a strong tie to hemophilia, and who demonstrate a commitment and interest in being a future leader in the hemophilia community.
Visit http://www.livingbeyondhemophilia.com/webapp/internships/forms-for-bayer-internships.jsp to learn more!
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