Leaders

Why, When, and How People Start Hemophilia Organizations

Laurie Kelley February 5, 2024

Social media has become a forum for advocacy, sharing ideas, and raising concerns about anything related to leadership in hemophilia. With the recent changes at Hemophilia Federation of America, people are concerned about leadership in our community: what is happening now, and what will happen in the future? I’m in the process of writing another book on leadership, so the topic has been on my mind. Here’s an excerpt from my book Success as a Hemophilia Leader, about when people decide to start hemophilia organizations, and why. It may not be directly relevant, but it has ideas to appreciate and think about.

Leaders start hemophilia organizations for many reasons. Whatever the reason, the founder of a new organization almost always reaches an emotional threshold: “I cannot accept this
situation anymore.” At that point, the new leader decides to take personal responsibility: “Something must change. I will change it.”

Do you see yourself in any of the following life-changing situations?

You need factor for yourself or your child. When there is no factor or advanced treatment in your country, you may request a donation of factor from charitable organizations such as Project SHARE and the World Federation of Hemophilia (WFH) Humanitarian Aid Program. These organizations might encourage you to start a hemophilia organization.

In 2017 Kunaal Mark Prasad of Fiji requested factor from Project SHARE via Facebook. At age 23, he had never had any. His doctors were reluctant to use concentrates, and instead
used cryo, a risky treatment. After his first factor infusion, Kunaal realized that he could help improve the lives of the estimated 60 people with hemophilia on his islands. He began reaching out, to find others and to start a hemophilia organization.

In 1998 Francisca Bardalez, from the Central American country of Belize, contacted LA Kelley Communications, for a factor donation. Francisca is the mother
of four boys—two with hemophilia. A single factor donation would help her boys, certainly.
But what then? I suggested that Francisca form a hemophilia organization. This was a
challenge, because Francisca lived in a remote area, where roads were rough and money was
limited. But her dedication triumphed. Francisca founded the Belize Hemophilia Society
on February 13, 1999.

This is how hemophilia organizations were formed with our help in Jordan, Tanzania,
Ghana, Zambia, Barbados, Fiji, and Rwanda. Watching your own child, a family member,
a fellow patient or friend suffer the excruciating pain of uncontrolled bleeding is a powerful
incentive.

You are inspired by another Hemophilia Leader. Leaders have strong motivational
effects on others. In the late 1990s, Raja Ammoury of Jordan, mother of a child with hemophilia,
read a story in the newsletter Hemophilia Leader about Jad Jadallah of Palestine. Jad is
a man with hemophilia who founded the Palestinian Hemophilia Association. Like Jad, Raja
is Muslim, and she felt a strong connection with him. Raja contacted me through her sister
in Ohio (US), an acquaintance of mine, and asked for advice. Inspired by Jad’s success, Raja
formed the first hemophilia organization in Jordan.

Hemophilia Federation (India), one of the largest hemophilia organizations in the
world, was founded in 1983 by Ashok Verma, a person with hemophilia. Ashok was inspired
by another leader, Professor Pier Mannucci, an Italian hematologist who also served as vice
president medical of the World Federation of Hemophilia. Professor Mannucci oversaw the
amputation of Ashok’s leg in Italy, and every night during the recovery period, Mannucci
visited Ashok as his doctor, but gently pressed him to consider starting a hemophilia organization in India. Ashok returned to India undecided. But Mannucci didn’t give up. He called Ashok daily to encourage him. Ashok was inspired by Mannucci’s attention and care. He
found his calling as a new Hemophilia Leader.

You want to start a chapter. At the WFH Congress in Montreal in 2000, I met
María Andrea Robert of Argentina, a young mother of a child with hemophilia. María told
me, with many tears, that she felt her national hemophilia organization was not reaching
families like hers in remote areas of her country. María briefly considered starting a new
organization—a second organization.5 But after careful consideration, María decided to
open an affiliate—a chapter—to coordinate with the national organization in Buenos
Aires. She could learn from the staff and use their resources, yet channel some of these
benefits to Cordoba, where she lived. María now runs a successful chapter and works well
with the national organization.

You have hemophilia and a special skill. It’s fortunate when someone with hemophilia
and a specialized skill, such as lobbying, medical knowledge, or public relations, can become
the leader of a hemophilia organization. Yuri Zhulyov is a lawyer with hemophilia. As president
of the Russian Hemophilia Society (RHS) for the past 20 years, Yuri brings enormous
talent and skill to helping decipher Russian law and moving his programs and goals through
the Russian legal system.

You resurrect a nonfunctional hemophilia organization. Your country may have a
hemophilia organization that is nonfunctional. The governing board never meets, the office
is deserted or nonexistent, and there is little or no communication. This happened in Puerto
Rico, an island territory of the United States. Yolanda Vega, the concerned mother of a child
with hemophilia, eventually tracked down the former president of Asociación Puertoriqueña
de Hemofília—who confessed that he was too busy to manage it. Rather than start a new
organization, she formed a new board and drafted a new constitution, also called bylaws.
Within one month, the Puerto Rican Hemophilia Association was reborn.

You are a physician and want to help patients. There may be nothing nobler in our
hemophilia community than a dedicated physician who becomes part of, or creates, a
hemophilia organization. He or she may already be struggling with the country’s lack of
resources, and may have a large caseload of not only hemophilia patients, but patients
suffering from other blood disorders or cancer. Many physicians offer free treatment, work
long hours, and open their hearts to these patients. One such physician is Dr. Gillian Wharfe
of Jamaica. She gives an extraordinary amount of time to treating hemophilia patients. She
offers her leadership and medical assistance to the Jamaican Hemophilia Association.

Sometimes, as Gandhi once said, we need to be the change we want to see. HFA is looking for board members right now; you can be apart of this change, if you have the vision, passion and skill to be a Hemophilia Leader.

Remembering Our Veterans: Renée Paper

Laurie Kelley November 12, 2023

This past week we honored our veterans for their service to our country. This past week I also received a message from someone in the von Willebrand disease community, surprised and saddened that no one seems to remember one of our great veterans—Renée Paper, RN. Her date of passing was November 7, 2007, at age 49. So young, but she made a huge impact. She was a pioneer in VWD care for all. She should be and needs to be remembered. So much of the care we receive today for VWD we owe to Renée. This includes my book on VWD, A Guide to Living with von Willebrand Disease, which I originally wrote with Renée.

Renée had von Willbrand disease, and was an emergency room nurse in Nevada. She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Renée Paper and Laurie Kelley at national meeting

If you never heard a Renée Paper speech, you missed some great speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

She traveled with me to Puerto Rico and the Dominican Republic on lecturing tours together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless of whether they had a disorder or disability.

Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

So we remember an inspiring and action-oriented leader as one of our veterans. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day. A legacy like that is the mark of a true leader.

Leadership Redefined

Laurie Kelley February 19, 2023

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!

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.

Mentoring

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.

Remembering Renée

Laurie Kelley November 6, 2017

This past week I’ve been working diligently on updating my book, A Guide to Living with von Willebrand Disease. I feel guilty saying it’s my book—it was actually “our” book, my and Renée Paper’s. It’s been out of print a while, and we truly need this resource. While thinking of Renée as I edited it, I realized that tomorrow marks the 10th anniversary of her passing, and working on this book made me realize again what a valuable leader, friend and advocate she was.

She was only 49 when she died, after an eight-week hospital stay following a fall. She had dealt with multiple health challenges: von Willebrand disease, diabetes, hepatitis C. Compounding this was obesity. After she lost her sister Michelle, who suffered from similar health concerns, she decided to have gastric bypass surgery, in an attempt to improve her health. She lost a remarkable amount of weight, but the years of illness had taken their toll on her body. What’s truly amazing is that nothing, nothing, seemed to slow Renée down!

She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Fiery style of lecturing? If you never heard a Renée Paper speech, you missed some great and shocking speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

Renée traveled with me to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.

Renée walked the talk: her message was always to get educated about VWD. Don’t let it keep you from enjoying life. Play the hand you were dealt. (Yes, she was from the Las Vegas area!) Play it and win.
Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

So we remember an inspiring and action-oriented leader, who was warm and loving, and also at times, a pain! And she knew it, and didn’t care. She had places to go and things to do, and a higher calling. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day—including the world’s first book on VWD, which will be re-released in 2018. A legacy like that is the mark of a true leader.

Barbados: Preparing Leaders for Change

Laurie Kelley February 17, 2014

Last Sunday, I had a nice flight back from Union Island to Kingstown, St. Vincent, and Martin Jennett, the pilot, was so supportive of the work we do at Save One Life, he gave me a huge discount on the charter flight price, only $100 (compared to $160 going over). We said our good-byes, and then I waited to board my flight to Bridgetown, Barbados. I sat in the little airport café, sweating in the humid air, answering email and reading. It was a quick flight to Barbados.

I settled in at a pizza place (Chefette) at the airport to wait for and in a little while, a lady and son came up to me—Sofia! And her four-year-old Aaron, who has hemophilia. We embraced and as always, when you meet another mom (or dad) of a child with hemophilia, it really doesn’t matter your nationality, race, religion. We are all family.

Sofia had asked me to come and visit, as no one from the hemophilia community has been here before (that I know of). She is interested in starting a hemophilia society. We hold Aaron’s hand– he is a live wire–and go to the parking lot, stuff the suitcases in and drive to the Marriott, not too far away. I am nursing a very sore throat. Sofia drove me to the Marriott, and we said our goodbyes.

Monday February 10, 2014

II had a leisurely morning, breakfast downstairs and then waiting for Sofia. And waited. Island culture—island time. Things will happen when they happen!

When she arrived, we had a chat. She explained about how she learned Aaron had hemophilia: He was 9.8 lbs at birth, seemingly normal. At 9 months he began crying all the time, and his knee was swollen. She took him to Dr. Inniss, her pediatrician, who sent her to the Queen Elizabeth Hospital (QEH), the only public hospital on the island. The doctors didn’t know what was wrong. They admitted him and did a biopsy on the knee! And they did an x-ray but never saw a bleed. The knee was traumatized but eventually the bleeding stopped and went down by itself.

In 2009 Sofia went to New York for a vacation, as a relative is there. Aaron had had a

fever. As the plane was landing Aaron cried and cried, inconsolable. No one knew but he was having a spontaneous head bleed. They took Aaron to Long Island
Jewish Hospital, a good HTC, and Dr. Richard Lipton helped determine this was a
cranial bleed. They ordered a CT scan. She said they told her, another 15
minutes and the damage might have been irreparable. Now they realized he had
hemophilia. Her cousin finally told her that her dad and both uncles had it! Aaron
stayed at LIJH for 6 months, and received factor. And there seems to be no permanent damage, thankfully.

Sofia explained how hemophilia is treated. Here in Barbados, everyone gets free factor. But I questioned what exactly does that mean? An unlimited supply? No. It means that the government buys a certain amount for the year, and whatever is there, you can use and don’t get
charged for. But inevitably it’s not enough and gets used quickly. This is why a few patients had recently contacted us for a donation.

Sofia also mentioned Aaron’s dosage, 1700 IU for a 4 year old, three times a week. This dosage seemed excessive.

We then drove to meet with Dr. Patricia Inniss, Aaron’s pediatrician. We waited about an hour and a half in her waiting room. It seems our day is
filled with waiting, waiting. No lunch. My throat got worse as the day went on. It was hard to maintain a conversation as I could hardly speak.

Finally we were let in. Dr. Innis is a lovely woman, graceful and civil. I gave her our toddler books about hemophilia, and asked her about Aaron, and the state of hemophilia on the island. I asked Dr. Inniss about Aaron’s prescription; why a 4 year old is be given 1700 IU, enough for a teenager. She wasn’t sure. So we talked about lowering his dose.

After that we drove to meet with Ms. Maryam Hinds, director of Drug Services of Barbados. Gentle, articulate, devoted. We had a nice
chat. She showed me the drug formularies, the tender and explained how factor was procured. According to her, they spend only enough money for 75,000 IU of factor VIII, much less than what one American child uses in one year! But at least Barbados is buying some. Many countries that have much more money than Barbados don’t even buy factor.

Queen Elizabeth Hospital

No one seems to know how many patients are on the island. I calculated 20? But one doctor later estimated 50. This, I told Sofia, is where a patient organization can really help out, by reaching out to patients in all the “parishes,” as they call them—St. John’s, St. Andrew’s, etc.

Tuesday February 11. My voice is gone and I can only whisper now, which is unfortunate as we meet with hospital doctors today. Today’s meetings warrant a dress, and Sofia drives us to meet the hematology staff at the Queen Elizabeth Hospital (QEH). The hospital is your basic, underfunded public hospital in a developing country, yet it buys factor, which is astounding. We go to hematology and meet with Dr. Laurent, Dr. Hawkins (originally from England) and a student. Laurent accepted our donation of factor, looked into the bag, passed over any thank you to sadly ask, “No
NovoSeven?” Which I guess shows the state of desperation here.

She painted a picture of hemophilia on the island. One patient is a fisherman, and he was forever getting cut with hooks, cleaning knives, etc. They asked him to think about getting another job perhaps? They
also mention the “poor whites,” on the other side of the island. This raised our eyebrows as being a politically incorrect thing to say, but yes, this is a real term used here.

The “poor whites” are descendants of an estimated 50,000 white slaves transported from Ireland to Barbados between 1652 and 1657. I read on line “Having succeeded in recruiting Irish men to die in the services of France, Spain, Poland and Italy, Cromwell turned his attention to others – men and
women press-ganged by soldiers, taken to Cork and shipped to Bristol where they
were sold as slaves and transported to Barbados.” They are now called “poor
whites,” or Red Legs or Red Shanks. They live in St. John parish and no one
knows much about them except they have hemophilia among them; they tend to intermarry and not mingle with the blacks. I thought that would make for a very interesting visit my next time around.

After our meeting, we went with Sofia to the pharmacy and waited till her number was called. She received quite a few boxes of FVIII. More concerning was that Aaron gets an allergic reaction to each infusion of these. I told her that her hematologist needs to let the manufacturer know.

We then drove a long way round the island to visit Dr. Chris Nicholls, her hematologist. He’s a nice guy. Young, responsive, communicative, smiling. When I carefully broached the subject of Aaron’s dosage, he agreed that we needed to look into this. When I carefully broached the subject
of Aaron’s allergic reaction, he was also in agreement that the manufacturer needed to be contacted. It’s great to find a doctor so agreeable and open-minded. He lamented that no medical records here are kept digitally; all records are kept on paper! He studied in the UK and just returned not even four years ago here. He works in the QEH but also has his own practice. We asked if he might be interested in forming a nonprofit with Sofia,
and he agreed.

Mel with Sofia: Outreach to other families

Last, we drove some more to visit a mother—Melanie. Sofia told us she runs a “shop,” and I pictured a little boutique. Not even close; it was a roadside stand, the kind covered with tarp that sells chips and drinks. Mel’s little son Remel fought desperately to hide from me though it was more like a game. Nothing we did could entice him to stay still for a picture. This led to an instant bonding which was good. We all laughed
at ourselves trying to get Remel to be still. Finally I tricked him and as he turned the corner, caught him in a great shot. I jumped in the air and pumped my fist, and the mom, and the neighbors sitting and watching all applauded! It was great.

Melanie told us that she has nephews with hemophilia in Guyana. I said we knew two brothers, Laurence and Lloyd… and she said that is them! What a small world! We’ve been helping her nephews for a long time. Another bonding moment.

February 12, Wednesday evening. Sofia invited local families with hemophilia to meet us at our hotel for dinner. We were surprised at how many came, including two in wheelchairs—Jeffrey and Leemar, who we both sent factor to recently.

Dinner with Barbadian families

There was Kole and Kim, whose son Konnor has FIX—a handsome couple. Jeffrey, age 61, a real
hoot… great outlook and sense of humor. Ansley Marshall, with son Caiel. And Leemar, age 26, FIX with an inhibitor, so sweet, gentle and funny! Born only a month before my son, but
a world away. He has suffered horrifically. Jeffrey is his uncle. They both
spoke about what the pain was like: four nights, no sleep. You don’t want anyone
near you. No one can do anything for you to alleviate the pain. Jeffrey said,
“And you just pray for a few seconds, just a few seconds, of no pain so you can
have some relief.” The pain comes in waves, like the ocean that pummels the beaches
on this beautiful island. Leemar’s friend who brought him was interested and
asked questions. Such bright young men.

We took a photo, I paid the check for the dinner and drinks we bought for everyone, and promised to follow up with books and materials. I gave a pep talk about change and what they can do as patients and leaders to improve medical care and access to factor. But it wasn’t my best as my poor voice was at an end. But it was a great way to end a great trip.

The origin of the name Barbados?The name is Portuguese. The reference of the Portuguese to the island as Los Barbados (the bearded ones) is believed to describe the bearded fig trees on the island.