Hemophilia leadership

Leadership Redefined

First published in PEN February 2020

I’m here in Antarctica, and have visited the grave site of one of the most famous leaders in history: Ernest Shackleton. The famed polar explorer was renowned for surviving a horrendous situation, and leading the men directly under his watch to safety. It’s such a compelling story, that I had to come to the Antarctic after reading in depth about it for years!

Ernest Shackleton

The bleeding disorder community is filled with admirable leaders, too. Though I often say that no one is a born leader, leadership can be birthed. In our community, leadership arose from the cataclysmic devastation when HIV was discovered in the blood supply in the 1980s and infected about half of our community. This horrific event birthed many leaders, whose legacies stand today.

When we think of those leaders—like Corey Dubin, Dana Kuhn, Val Bias, Jeanne White-Ginder, and Louise Ray—we think of certain leadership qualities: vision, authority, courage, commitment. These are leaders who made history and secured a safer future for us all.

Yet today, when you ask regular moms and dads and hemophilia patients about leadership, a slightly different picture emerges, highlighting different qualities. It helps to know more about what our community members seek today in leadership—who they admire, and what they expect from the leadership of tomorrow.

Types of Leadership

There are many types of leadership, but I usually peg leaders as one of three types: positional, situational, and transformational. In a nutshell, positional leaders are usually elected, appointed, or inherited: think president, CEO, executive director, chief, even king or queen. Situational leaders may or may not be positional leaders, but they rise to the forefront when a problem, event, or situation calls for a leader. Think first responder, rescuer, or anyone who steps forward to take action, like Lech Walesa of Poland in 1980, or US Army Major Hugh Thompson, Jr., during the Vietnam War. Or even Ripley in Alien!

Transformational leaders influence a community, industry, group, or era to make massive and lasting changes: think Jesus, Gandhi, Walt Disney, or Steve Jobs. When asked about leaders, people often name leaders who fall into those three categories. Characteristics of these types of leaders? Powerful, authoritative, visionary, action-oriented, decisive, committed, communicative, innovative, influential, even charismatic. Do bleeding disorder families see leadership the same way?

The Softer Side of Leadership

Rather than describe leaders in our community as figureheads with power and influence, parents and patients associate softer qualities with leaders these days. These softer qualities include traits that make the “followers,” or beneficiaries of leadership, feel more secure and feel their needs are being met. We polled parents and patients on Facebook to see what leadership qualities they look for most in the bleeding disorder community. And top among these qualities is listening.

 Eva replied, “For me, a good quality of leadership is to have an ear to listen, to communicate. To protect their member.” Krissy agreed. “Leadership is the ability to not just listen but truly hear you and your concerns. A leader inspires others and is someone who advocates passionately.”

 Dr. Anupama Pattiyeri of India added that a leader must be “a patient listener and motivator—someone who focuses on solutions and not on problems alone.” Katelyn and Alicia both put listening as their first sign of good leadership.

Wayne remarked that leadership means “the ability to listen before deciding. Having ties to the community and leading with integrity, honesty and compassion.” Karla agreed; for her, leadership means “commitment to our community combined with a personal connection.”

Tina noted that listening, combined with empathy, insight, and integrity, gives a leader the ability to understand life from a patient’s or caregiver’s point of view; the ability to understand important values of the community; and “the strength to stand up for those values.” In other words, parents and patients view the traditional forms of leadership as less important than “servant” leadership.

Servant Leadership

The style of leadership parents and patients most often mentioned is known as servant leadership. Servant leadership puts people’s needs first. A leader must understand the needs of the followers or constituents, be there with them, even suffer with them. Indeed, a trait of servant leadership is compassion, which means to suffer or feel alongside someone. It follows that traits of servant leaders include listening, empathy, stewardship, awareness, healing, commitment, and community-building. Historically, servant leaders have been either positional, situational, or transformational leaders too, but have always put their people’s needs first.

Ray agreed. “To be in service to the people you are leading—servant leadership” explains the style of leadership that works best today in our community.

Who are the servant leaders in the bleeding disorder community? Kathe cited her HTC physicians: “Both physicians are excellent leaders…They always take time to explain to patients and integrate therapies into everyday life. I am a better nurse for knowing them.” Rayna mentioned her doctor, currently at St. Jude’s, “for leading a whole generation of patients through recombinant therapies by studying the medicine and checking the facts. All the while he has a wonderful bedside manner to both parents and children.”

Kelly, who was nominated by respondents as a servant leader herself, listed integrity, compassion, and honesty as important qualities for our community leaders. These characteristics don’t require a leader to be in a position of authority.

But positional leaders—those in authority—can be servant leaders as well. Christal nominated a couple who started a chapter in her state, and do so much to help the underserved members of our community.

Likewise, Tiffany recommended Sue Martin, executive director of Hemophilia of South Carolina, as a servant leader. “She gives our organization her heart and soul. She has turned our local chapter into a source of hope, progression and compassion for our bleeding disorders community. And most importantly she drives people to educate themselves on advocacy, so we can advocate strongly and effectively for our children, and teach them how to become strong advocates for themselves.”

Ray warned that as great as servant leaders are, they must ensure that they are not indispensable. In other words, leaders must develop other leaders.


The great British wartime leader Winston Churchill was called the “Old Lion.” I think of this when I think of the top leaders in our community who fought our war with HIV, and are now in their 60s. Mentoring a new generation of lions, then, is vital. Some mentoring happens at the top, with youth leadership programs from National Hemophilia Foundation (NHF), but mentoring can occur anywhere by any of our servant leaders.

Two mothers mentioned their own sons as servant leaders who mentor younger followers. One mentioned that her son never missed a year of summer camp since age seven, and even after moving out of state for a while, came back to work as a counselor in summers. Servant leadership by example, combined with positional leadership, is powerful!

Kimberly nominated her son, who she believes has these leadership qualities, so important in servant leaders: integrity, honesty, loyalty, empathy, compassion, inspiration—and mentoring.

Unsung Heroes

Finally, Lisa made a poignant suggestion: “I’d like to nominate all of the ‘silent leaders’…parents who take the time, often in private, to welcome new members, offer our help, guidance, experience as parents with a baby with a bleeding disorder…Often done behind the scenes, but very helpful and appreciated nonetheless.”

 Sometimes the greatest leaders are the ones without the fanfare, tweets, photo ops, and popular achievements. They are the servant leaders who quietly and modestly, powerfully and permanently, change the world day by day, child by child. They are all of you—parents, patients, doctors, nurses—who dedicate their lives and careers to the bleeding disorder community.

Who are the Future Hemophilia Leaders?

mentor (n.) Look up mentor at Dictionary.com

We often hear the word mentor, but what does it mean? Mentor hails from Greek writing. Mentor was a friend of Odysseus and adviser of Telemachus (son of Odysseus and Penelope) in Homer’s Odyssey. It may also derive from the Greek word  mentos (intent, purpose, spirit, passion) or from the Latin  monitor (one who admonishes), or from the root men (to think).

One of the prime responsibilities of any leader is to mentor and raise up other leaders. It does no good to create an institution, organization, or program and not share the leadership knowledge and managerial information required to run it and carry forward the vision. Leadership is an art, and young people can learn from the current masters how to use the tools and right perspective to create their own masterpieces. Never is this needed more in hemophilia. Our current leaders at NHF are working actively to recruit and teach up and coming leaders.

And industry is too! Here is a unique and brilliant opportunity to particiapte in leadership training. Check it out and apply today! Become a leader, with an aim to helping the future hemophilia community, here in the US and globally!

Program: Bayer Hemophilia Leadership Development Program (BHLDP) Internship

Requirements to Apply: Students enrolled full-time in college who are touched by hemophilia and have a strong interest in and commitment to becoming a future leader in the hemophilia community.

Program Details: Interns will travel to Bayer’s U.S. Headquarters where they will participate in activities that aim to help them grow personally and professionally. Selected interns will:

·       work directly with leaders at Bayer as they participate in formal training on communication skills, effective problem solving, leadership and compliance

·       work with hemophilia organizations in the area to learn about the work done to support the hemophilia community and how business professionals can support these efforts

·       meet with healthcare public policy professionals in Washington D.C. where interns will see first-hand how effective advocacy relations impacts legislative decisions.

This is an this eight-week, paid internship (June – August 2013). For more information and to download an application, visit www.livingbeyondhemophilia.com/intern.

Applications are accepted till February 8, 2013. I’ve known quite a few people who have finished this exceptional training and loved it! It’s helped them get jobs and open many new doors.

20/20 Vision in Puerto Rico

“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.


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.

Read more

Wanted: Leaders!

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

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.

Do you have what it takes to become a leader?

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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