September 2008

Fund Raising Dallas Style

Yesterday I enjoyed western hospitality at the Hearts for Hemophilia gala fundraising event hosted by the Texas Central Hemophilia Association. I was greeted at the airport by long time friend Andy Matthews and his 2 year old son Keeton. What a change from London! If you’ve never been to Dallas, it’s easy to describe: hot, flat and big! Big buildings, monumental, and very friendly people. They treat guests well!

The event was spectacular. About 200 people showed up in black ties, cocktail dresses and with open checkbooks to bid on a silent auction and later to play casino. But first, Shanna Garcia, president, welcomed everyone and presented the theme: Moms Making a Difference. She mentioned the role women play in raising a child with hemophilia, and cited some of the audiences in the room. Then she showed a video of Camp Ailihpomeh (Hemophilia spelled backwards), which highlighted the great work of Texas Central, and the joy of the campers.

Then I got up and promptly put a damper on things by showing a multimedia slide show about the plight of those in the developing world. Well, it wasn’t so bad. After sharing a few stories and statistics, I also showed what happens when factor, funds and training flow into the developing world: night and day! I highlighted the Dominican Hemophilia camp “Yo si puedo,” with music a la Gloria Stephan, to keep things upbeat. Many people were moved by the photos and asked to sponsor children and even come on a trip with me!

Shanna and her colleagues Christy Argo and Shelley Embry (executive director) presented me with a huge cardboard check… and a real one for $1000 for Save One Life, our child sponsorship nonprofit.

We noted sadly the passing of Paul Newman, a tremendous friend to the hemophilia community, through his Hole in the Wall Gang Camps. I shared with the audience that Newman’s camp left a lasting mark on my children who hands down rated it way better than DisneyWorld. Why better? it made each child feel that they were the center of the universe for one week; that they were unique, valued and important. No amount of rides and characters can take the place of that.

I loved getting to meet so many parents who have been on my mailing list for years: to hear their stories, share some laughs and bond. What a great way to cap off a long week from home!

My deepest thanks to Andy, Shanna, Christy, Shelley and everyone who made this evening so hospitable, enjoyable and exciting! Thank you for the support for Save One Life. Dallas–it’s a great place to visit!

Inhibitor Meeting in UK

Grifols, a Spanish based company that manufacturers Alphanate and Alphanine, held a one day educational conference on inhibitors for nurses in London yesterday. I was pleased to start the day with a talk on inhibitors in America: how the main struggle is finding a way to afford the treatment that is already available, given mounting pressure from payers and limited lifetime caps. Professor Alessandro Gringeri, of the University of Milan, gave an excellent comparison of ITT protocols around the world. He reminded us that ITT has been with us for 31 years, but since the first attempts, different protocols have developed. He reviewed the specifics of the Bonn, Malmo and Van Creveld Klinick protocols, and how responses to different ITT are either patient related or treatment related. ITT does not work with all patients, particularly those with mild hemophilia.

Dr. Sylvia von Mackensen is a psychologist at the University Hospital Hamburg-Eppendorf, Hamburg, and gave a presentation on Quality of Life Studies: measurements, outcomes and expectations. This is an important subject for inhibitor patients, who suffer a great loss of QoL when by passing agents or ITT are not always effective.

My colleague Becky Berkowitz, RN from the HTC in Las Vegas, Nevada, spoke about nursing in the US. Becky has a unique position working in an enormous state with a small population, and a lean HTC staff: her efforts to visit the native Americans and advocate for their treatment held the audience’s rapt attention.

The rest of the afternoon held presentations by Dr. Mauricio Alvarez-Reyes of Grifols, nurse Allyson Hague of Manchester Children’s Hospital, nurse Kate Khair of Great Ormond Street Hospital and Vicky Vidler, nurse consultant of Sheffield Children’s Hospital. It was a wonderful event, full of information and diverse speakers.

After the program, I took a tour of Great Ormond Street Hospital with Kate Khair, Virginia Kraus (Grifols), Becky Berkowitz, and Mark McDonnell, UK Manager (Grifols). It’s a major HTC, with over 450 pediatric patients, with a beautiful ward. I had always heard of this famous hospital and it was a pleasure to see it from inside.

This has been productive week: I was also able to visit on Tuesday the Haemophilia Society, which I believe was one of the first hemophilia society in the world. Chris James is the relatively new executive director, and he graciously allotted me 3 hours to tell me about their programs and population. We also spoke about sharing my company’s free resources with his members. They have excellent programs and in many ways are one step ahead of many other organizations in terms of programs for inhibitor patients.

Last of all, I saw on Monday an historic site: the Broad Street Pump, the epicenter of the devastating 1854 cholera epidemic of London. This important landmark represents the beginning of modern public health. It was here that a contaminated well led to hundreds dying within one week, and caused English physician Dr. John Snow to buck conventional medical thinking, which thought it was miasma–bad air– that caused the outbreak (this was before germ theory). By using a scientific method and putting himself at great risk, Snow interviewed an entire neighborhood, noting where deaths occurred: the outcome was a map which revolved around the pump and well. After a struggle to convince authorities that water was responsible, Snow had the handle removed. The epidemic was over and a new theory on germs was born. This one pump represents all modern day efforts to provide clean drinking water to overcrowded cities worldwide. It was simply amazing to actually see the pump, and be grateful for the dedicated efforts of this remarkable British physician. (Read The Ghost Map for an excellent recounting of this story)

Legends and a Real Life Legend

Bill Boughton and Laurie Kelley

I’m in London this week for a conference on inhibitors; I’ll be speaking Wednesday to a group of nurses, as a guest of Grifols, manufacturers of Alphanate and Alphanine. I came early to visit my old friend Bill Boughton, who lives in Somerset, two hours west of London. Bill is an inspiration: we met over the phone at least 10 years ago when he began, at the age of 75, to get involved in helping boys with hemophilia in Romania get factor. Imagine! His connection to Romania? He and his wife adopted a 7-year-old Romanian orphan.

Bill has since then helped Project SHARE get some factor to Romania. (Grifols is also a sponsor of Project SHARE). He also attended two summer camps in Romania, created and sponsored by STAR Children Relief, directed by our mutual friend Adriana Henderson. There was Bill, age 83, driving from London to the Black Sea to befriend some lovely but very poor boys with hemophilia. And he did it all with wit, charm, incredible energy, and genuine generosity. He since sponsors a young man with hemophilia there.

So in coming to England it would be hard not to visit this octogenarian volunteer, who simply forgets his age. He loves life, and he engages fully in it. I took a 6-hour flight to London, and the next day (yesterday) took a lovely two-hour train ride through the countryside to see Bill and his other daughter Emma, age 23. It was a great reunion, and not one to sit still long, Bill invited me to come and see nearby Glastonbury.

Glastonbury is a charming town with an amazing reputation: site of the fabled Avalon, home of King Arthur. Indeed, at the ruins of the medieval abbey, which were stunning, we saw the “graves” of King Arthur and Guinevere. Glastonbury is reputed to have had the oldest Christian Church in England, and is a pilgrimage site. Also it is reputed to be where Joseph of Arimathea, said uncle to Jesus, came. Joseph of Arimathea is famous for asking Pilate for the body of Jesus, and burying it in the tomb he had intended for himself. In the poem “Jerusalem,” by poet and writer William Blake, the question is posed whether Jesus himself came to England, to Glastonbury with his uncle?Another myth says that Joseph, upon reaching Glastonbury, planted his staff, which immediately blossomed into a thorn tree, which flowered every Christmas day. Cromwell ordered the tree cut down, and it is said that as it fell, its thorns blinded the axe man in his eye. Glastonbury is full of superstitions, healers, tarot card readers, and alternative medicine shops. Allegedly, some of them sell leaves that sprout from a cutting of the original thorn tree. Interesting stuff!

One more myth: Joseph is said to have buried the Holy Grail (the cup Jesus drank from at the Last Supper) just below the Tor (hill), where a spring began to flow and the water was supposed to bring eternal youth to whoever would drink it. I looked everywhere desperately for such water, but alas I am still 50! I do think Bill found it some time ago: not only does he carry on like someone half his age, he doesn’t look at all 85. Is it the water, or his love of helping others that keeps him young at heart and health?

The Price of Blood

There is an ever constant debate throughout the worldwide blood community about whether blood donors should be paid or voluntary. There are all kinds of implications. I found the history of blood donation fascinating, as blood developed from a charitable service to a global industry. Here’s a snippet of what I read in Douglas Starr’s excellent and must read book Blood.

In the early 1900s, transfusion of blood was a clumsy, laborious process. No one stored blood in a blood bank. When a patient needed blood, he himself had to find a donor (this must still be the the case in some countries). One day in 1921, Percy Lane Oliver of the British Red Cross got an emergency call to find a donor. He realized this was stressful and inefficient, trying to find random donors when someone was already in trouble. So Oliver decided to create a registry of volunteers. More astonishingly, he ran it from his home! Oliver became a man on a mission, obsessed, and his idea was a stroke of genius. He worked seven days a week, recruiting, filing paperwork, and phoning people. Everything he did was free. His services were in so much demand, he could never get away even for a day. (You can imagine there was so much joy in being able to help when no one else could) Oliver even changed doctors’ practice of slicing open the arm and exposing the vein to insert a needle: all they needed to do was insert a needle now! Eventually, Oliver registered 2500 donors, all of whom were unremunerated. Britain led the way: soon donor panels were started in other countries. Dr. Arnault Tzanck established the Emergency Blood Transfusion Society in France. And he was also an energetic, tireless, and positive thinker. He wrote: “The man is truly poor who does not know how to give.”

Americans adopted the blood transfusion services, too, but were different: remuneration was ok. So paying for blood began in America. And Oliver? The man who created the idea of a registry of blood donors, who worked endlessly, helping to save countless lives, never received any recognition in his lifetime! Thanks to Starr, he is now recognized as revolutionizing blood transfusion services.

(I’m headed for England next week, a country with many medical firsts, especially in any fields related to blood. I’ll blog from there next Sunday)

No Guarantees, No Refunds, Just Life

I went on my annual white water rafting trip to Maine this past weekend. Our outfitters are CrabApple, a family owned business in the Forks, Maine, that does a great time of giving you a thrill of a lifetime. If you haven’t tried white water rafting, make it a goal for the coming year. It’s a great family experience, as well as personal adventure.

It was a scheduled dam release, with huge 25 foot waves, and class IV rapids, and the dam spewing 8,000 cubic square feet of roiling water into the Kennebec gorge. People often gage adventure sports by their risk level. Many people are afraid to try rafting; if they listened to the safety lecture about potential risks, you might see why. Our guide Jason told us one family scheduled for the weekend had quit at the last minute, changing their minds about the risk level.

“They had a bad experience last year, and decided not to risk it again,” he said.

What was the bad experience? we asked. A broken nose from a wayward oar? A near-drowning? Vertigo (which I got last year; very bad, lasted two weeks)?

“They fell out,” he replied.

Fell out? Yes, they fell out and were caught in the cold churning water. No doubt this can be a shocker, but pretty much everyone who falls out is brought back in again, and then you have a dynamite story to tell the rest of your life. This family was brought back in by their guide, safely, though I am sure they had a quick moving swim and swallowed and choked on a bit of water.

When you sign up for rafting, you are shown a video of what the trip will be like; you are given an in depth-safety lecture. You are taught what to do should you fall out. All very humorously related by Wade, who had us in fits of laughter. Of course white water rafting is no joke. You have to pay attention and battle some high water, rushing toward you, slamming you in some cases, rapid after rapid. You work in unison, following your guides commands: “All back!” “All ahead!” And you are with about 12 other rafts in your outfitters, and then can see many more rafts from other outfitters. You are never alone.

What I didn’t quite get is what that family expected. When you go rafting on raging waters, there is always a chance you could take a spill, get knocked over, flip the raft. You are blasting through rapids, after all, and this is not a gentle sailing trip. Not to expect this is foolish and unrealistic. Of course, nobody in particular wants to get “dumptrucked,” as the guides say, but it can happen. I’ve gone five years now and we’ve never had it happen. And on this trip, Wade himself, the guide, in another raft, got flipped like a pancake right off the back of the raft and had to swim like mad to get back to it, all of it caught on video which we watched and roared at later. Of course Wade got totally razzed from the rafters and the other guides.

So when you accept the reservation to go rafting, you must include the possibility, however remote, that you could go for a wild swim. In fact, I think that’s a huge part of why people go: to see what will happen. To see how they will face the unexpected, the unknown. To see what life offers them. To see what they are made of.

We all accept risks when we decide to have children. And there are so many more risks than those in rafting. Hemophilia, an incredibly rare disorder, is one of those risks. So rare, you couldn’t ever imagine that it would happen to your child. But there you are: a child with a life long, obscure bleeding disorder. I didn’t want this, but I couldn’t cancel this trip. Couldn’t return for a refund or exchange. I had to take what I got and deal with it somehow. And we did. We had ups and downs, we got slammed around a few times. We made mistakes, didn’t follow the rules, couldn’t control the river of events, and realized we didn’t have a guide all the time. But we made it. With learning as we go, a lot of teamwork, we made it.

All of parenting is a grand risk, and all of life is a grand risk, and you must take what comes, with no guarantee on the outcome and no refunds or cancellations. A rapid is a rapid, and hemophilia is hemophilia: something that catches your breath, can make you scream, is a wild ride, often out of control, but at the end, you’ve done something amazing, you’ve mastered something others fear.

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