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.

Leadership… Start When They are Young!

I was invited last week to attend the National Hemophilia Foundation’s Youth Leadership Graduation. This was a Zoom event, and it was so nice to see Dawn Rotellini, Brendan Hayes from NHF, and all the beautiful young people who have completed the program.

Have you heard of it?  The NHF website states: NHF’s National Youth Leadership Institute (NYLI) provides young people (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others. The National Youth Leadership Institute is a two-year program designed to assist young people from the bleeding disorders community in becoming well-trained, recognized leaders. 

Each graduate gave a statement about what the program meant to them, and what they accomplished through it. It’s pretty amazing to hear these young people speak about how they gave back to their community, mentored others, traveled to attend events, and most impressively, advocated at the state level about healthcare costs and employment concerns.

To meet this year’s Youth Leaders, go here.

If you are interested or know someone who could benefit from this program, encourage them to apply.

I’ve been studying leadership for decades, and even wrote a book about it, for those in developing countries. If you are a leader in the making, you might like to read it too, because leadership transcends age and borders. Leaders are not born, but are made, forged even. And leaders are readers! Order here.

Congratulations to all the NYLI graduates!

Out of Silence: Leadership

My last two blogs focused on leadership, and two beloved leaders who have passed, much too soon, from this life. I have spent this week with another amazing leader, very much still with us: Eduardo Strauch, a survivor of the 1972 plane crash in the Andes, of “Alive” fame.
Eduardo Strauch, of Uruguay

You may know the incredible story, dubbed “The Miracle of the Andes.” On October 13, 1972, Uruguayan Air Force Flight 571 crashed at 11,710 ft in the inhospitable Andes, while bringing 19 young members of a rugby team, and their families and friends, to neighboring Chile. Thus began perhaps one of the greatest survival stories known. Amazingly, 33 of the 45 on board survived the initial crash, some with injuries that would later claim their lives. And 72 days later, 14 were rescued after two more of the survivors walked out of the Andes for 10 days to find help.

It was a miracle anyone survived. Due to pilot error, the plane descended too early in dense cloud cover, and struck a mountaintop. The right wing snapped off, flipped and severed the tail, then the left wing sheared off. What remained of the fuselage tobogganed down a steep slope and smashed into a mound on a glacier, traveling top speed. Stunned, many in agony from wounds and shock, wearing only street clothes, the survivors sprang into action, displaying heroic teamwork.
Approaching the Valley of Tears and Crash Site
What happens to us personally, when we are hit with an unexpected tragedy, say, like giving birth to a beautiful child, only to learn he has a life-long, life-threatening bleeding disorder? We can collapse and give up; we can grieve endlessly; we can become dependent on others for help; or we can take action to improve our lives and those of our loved ones. The Andes boys took immediate action, even though many of them were wounded. They helped one another, they organized whatever they had, they started planning. They survived.
Horseback through rivers and high cliffs
I journeyed this past week to the crash site, high in the Andes, accessible only by hiking or horseback, to pay my profound respect to those who perished. They are buried in a mass grave on a ridge near the crash site. There is also a makeshift memorial, with an iron cross, upon which people leave personal mementos. This story has touched millions of lives throughout the last 50 years, and only a few get to come here, to the “Valley of Tears,” to see the place where so much agony, sorrow, terror, solitude, struggle and leadership took place.

Read more

A Transformational Leader Remembered

Dr. Tahir Shamsi of Pakistan

We lost a few of people in our bleeding disorder community over the holidays, including young people with hemophilia. But in two weeks we lost two outstanding leaders in their fields. One was Val D. Bias, who I wrote about last week. The other was Dr. Tahir Shamsi of Pakistan. Both were my friends.

Tahir was a special sort of friend to me. We inhabited very different worlds: I am a woman, Christian, nonmedical, American. He is a man, Muslim, nationally-recognized physician and researcher, Pakistani. We were united not only by hemophilia, but by our burning desire to alleviate suffering.

We met on a boat in Rotterdam, in 1998. I was just beginning my work overseas, funded at that time by Bayer Corporation. Bayer had sponsored this cruise around the harbor, on a Tuesday evening during the World Federation Congress. As I walked about the ship, I saw him and he saw me. He is friendly, but intense. Efficient, wastes no time. Who was I and what was I doing there?

Laurie and Tahir’s First Meeting – 1998

I explained about my program to identify patient leaders in developing countries, and teach them about leadership, not just management; about advocacy, not just meetings. About vision, mission, goal setting.

He invited me on the spot to come to Pakistan.

That startled me. Me? Mother of three young children, in Pakistan? Pakistan at the time was pretty isolated from the world. Almost no one went there unless they were diplomats. It seemed so… so foreign. And yet I was intrigued. I love challenges and love risks. How would the Pakistanis accept me? What could I possible do for them?

He assured me all would be well. I could stay with him and his wife, and family. He would arrange my visits while there.

A year later, I went. It’s a story for another time (maybe another book) but I fell in love with Pakistan. Never have I been so welcome in a country and made to feel at home. And that seems odd, given our “differences.” I learned the differences are mostly superficial. We have so much more in common than different. I returned three more times and would have gone in this past year, were it not for Covid.

Tahir and I maintained contact throughout the years; I watched his family grow from two young children to five. I played with his children at their house, rode camels and ponies on the Arabian sea with them, took selfies, went to the mall, and had a ball. And Tahir and I met patients throughout Pakistan, worked with the new hemophilia society to help it grow, and we supported his surgeries with donated factor. We traveled to Nepal together, met up in Paris at a conference, and always had ideas brewing.

In fact, it was in Nepal, after our huge conference we gave for medical personnel, that Tahir shared his vision for a new institute in Pakistan. Somehow, we ended up sitting on the floor of a coffee shop, with him sketching out (on a napkin!) an idea for a new blood institute that would handle all sorts of cases, disorders, diseases of the blood, and be a research and training facility.

It all came to pass. The National Institute for Blood Diseases was created and Tahir founded Pakistan’s first bone marrow transplant program. The president of Pakistan recognized him for his incredible achievements. And the president offered his condolences in a tweet shortly after Tahir’s passing.

He got up to go to work in December, as usual. We had just messaged one another about how I would come over as soon as it was safe to travel, and stay at his new home, which accommodated all his growing family. He messaged, “You are always welcome.” Combination work and social visit. The kids are mostly grown, though the youngest is still just 15. I imagine he kissed them good-bye, as he adored his family, and had his driver take him to the office. We would have had interns to meet with, surgeries and patient visits planned. I do know he felt ill suddenly, and asked to be driven to the hospital. He suffered a massive brain hemorrhage, of all things. He never recovered and died, age 60, with so many depending on him, with so many achievements, but I know with so many more things he wanted to accomplish.

I don’t ever recall him saying he had a vacation in the 23 years that I knew him.

His death shocked me. You can never believe so wonderful a healer could be so ill. I could and would just pick up my phone whenever, and could message this famous and highly regarded physician, and chat with him like you would a regular person and friend.

But no more. Never again. He was gone, in a flash, a heartbeat, as if he sped away to attend to a medical emergency and never returned. He was always helping others.

The grief over his passing was palpable and deep. The NIBD team wrote on Facebook: “He was a national asset, a mentor to the juniors, a patron for many noble causes and a fatherly figure to all. Our loss cannot be described in words as the void he leaves behind is unfillable. He was director of the stem cell program, paragon of health research, an outstanding individual with excellent mentorship abilities, and an incredible human being. May Allah grant him the highest place in Jannah. Ameen.”

I will return to Pakistan, but it will never be the same without my friend, this incredible pioneer of medicine. He was a transformational leader, of the rarest type.

Tahir comforting a father
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