Elie Weisel

Celebrating Life at NHF

With my heroes Vaughn Ripley and
Barry Haarde

The beautiful speech given at NHF by chair Jorge de la Riva stressed caring, and the dangers of indifference. Jorge, the father of a teen with hemophilia, deftly drummed home by a quotation from Holocaust survivor Elie Weisel, whose book Night, I just reread a few weeks ago:

“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.” 

How appropriate to use Weisel to remind our community that if we do not watchdog our own interest,s we may be hurt–again. And this is why the theme of this year’s meeting was “Nothing about us, without us.” More and more, NHF (and HFA and other groups) are steering the interests of the community, from research, to data collection, to blood supply safety, to genotyping. We’ve come a long way in 20 years, and paid a hard price.
Two more great guys! Derek Nelson and Chris Bombardier

Val Bias, CEO of NHF and person with hemophilia, gave a speech on the many and exemplary accomplishments of not only the NHF but of various groups and individuals in our community. During the videos shown, I thought instead of two people who have done extraordinary, history-making things in our community, just this year—Chris Bombardier, the first person with hemophilia in the world to conquer four of the seven summits. And Barry Haarde, who has now ridden his bike three times across America, to bring attention to the public of hemophilia and HIV. It’s nice that we showcased who we did, but Chris and Barry volunteered weeks of their lives to do something no one else has ever done, which are extraordinary feats even without hemophilia! 

Martha Hopewell with
volunteer Evan Poole

I’m happy to say we did acknowledge them, at the Save One Life Celebration on September 17 at the Intercontinental Hotel in Washington DC, just before NHF kicked off. It was a lovely event, with about 77 attendees, including donors and sponsors. We honored special people who have helped make Save One Life a success so far:
 Over 1,300 people with hemophilia in 12 countries who live in poverty supported directly with financial aid
80 scholarships to foreign individuals since 2012
8 micro enterprise grants in 2014
Over $1.5 million in direct aid!
Laurie with friend and colleague Val Bias,
CEO of NHF

All this goes to people who live on the fringe of life, the poor, the suffering, in places like India, Zimbabwe, Pakistan and Honduras. And we honored Chris and Barry who have raised so much money for us. And our Inspiration Award went to Mark Skinner, former NHF president, WFH president and current WFH USA president (and personal friend) who has inspried me for many years with his brilliant insights, his compassion for the poor and his endless volunteerism. Accepting the award for him was Mike Rosenthal, executive director of WFH USA. We were surprised and pleased to see Doug Loock in attendance, who, back when he worked for the American Red Cross in 2000, gave us our first grant, and was the first supporter to help us!

Doug Loock, in red tie, who gave Save One Life
our first ever grant in 2000

Thanks to NHF for allowing us to hold the even at their event (thanks, Val!); and to ASD Healthcare (thank you, Neil  Herson!) for being our major supporter of the event. Also thanks to Baxter, Novo Nordisk and CVS Health for supporting the event.

Best news of all? We picked up 30 more sponsored children as a result! 
If you want to learn more or support a child, please visit http://www.saveonelife.net

Laurie with Neil Herson, president of ASD Healthcare, accepting
award for Chris Bombardier
Martha with Jessica Swann, accepting award for Judi Faitek

Usha Parasarathy accepting award for
Program Partner of Year
Mike Rosenthal accepting award for Mark Skinner
Eric Hill, president of BioRx
and Board Member
Arwind Manohar of Baxter accepting
award for Barry Haarde

Great Book I Just Read
Blood Meridian [Kindle]
Cormac McCarthy

The author of No Country for Old Men does it again. This is a masterpiece, an American classic, written with such skill and depth that you cannot skim, cannot rush; it has to be savored, thought about, explored. The main character, a young man only referred to as “the kid,” runs away from home in the south and heads west in the 1800s. He meets many groups and characters, but ultimately joins a scalping posse, intent on capturing as many Indian scalps to sell as possible.  Like many of McCarthy’s stories, the theme is bleak, desperate, dusty and desolate, like the land the kid crosses. The main theme seems to be that evil lurks everywhere: there are no good guys or bad guys in the Wild West: just survival. And every single person, whether Indian, white, male or female, harbors evil deep within in the quest for survival. It’s a somber read, but the writing style alone is like a delicate fabric of words, woven so that you see no seams, only a beautiful, dark, and captivating cloth; worth reading if you want to read something by a master. Five our of five stars.

Oldest Hemophilia Humanitarian in World?

Bill Boughton

I
flew to England this past week—for 48 hours only! Left on a Wednesday night,
returned on a Friday night. A British customs agent asked me why I was staying so short
a time—“All this way?” she asked, eyebrow raised. “Yes, to visit a
dear friend,” I replied. (And also, I have stuff to do on the weekend here in
Boston.) “Besides, it’s faster than flying to California,” I noted. “True,” she replied.
Where does she live?
Not
she, he. “He” is a 91-year-old gentleman named Bill Boughton, and truly one of
my favorite people in the world. There are not many people I’d fly 6 hours each
way, and three hours worth of train, tube and express train each way to see—not
to mention that nice hefty several hundred dollar “tax” (Thanks, British
Airways) above and beyond my frequent flyer miles.
Bill
could very well be the oldest hemophilia humanitarian in the world. At an age
when most people are immobile, or aching, or lamenting, Bill has not lost his
joy of living, his quick wit, his desire to help the less fortunate. He is in short, a marvel.
He is blessed with good health, excellent joints, but also a resilient and
grateful attitude; he appreciates everything he has. And he wants to help
others.
Bill’s daughter Emma and the goats!
How
did this charming and witty elder statesman get involved with hemophilia?
There’s a tie to Romania. He and his wife in the 1980s wanted to adopt a Romanian
orphan, a victim of Romanian dictator Nicolae Ceaușescu, a brutal,
heartless politician who enforced multiple births in Romanian women, by denying
birth control and insisting they stay pregnant. As a result, thousands of
babies were abandoned; many contracted AIDS. During his visit to Romania, Bill happened upon a boy
with hemophilia—I hear this kind of story often!—was impressed by the child’s
needs and fortitude, and wanted to help. Coming home to Somerset, England, he
phoned the chair of the Haemophilia Society, in London. They directed him to me.
So
in the early 2000s, I received a surprise call from an articulate man with a
British accent: “Hallo!” he started. And an eternal friendship was formed. He
wanted to source factor, and heard that I donated some. Eventually we were able
to get this boy some factor, and Bill and I conspired together from time to
time to help some Romanian children with hemophilia.
Laurie Kelley and the kid
I
loved chatting with him, first, because he impressed me with his concern for
others, especially at his age. Second, the man was downright funny! Witty.
There’s nothing like British humor, unless it’s Irish humor (oh, that comment
would set him off). The fact that I lived in Boston, home of the Boston Tea
Party, where we dumped the King’s tea in the harbor and set off the Revolutionary
War, was a source of many jokes between us. He called me a “Yankee” and I
called him a “Limey.” Or “Irish Witch” to my “Prince William.” Sometimes he
would just call to chat: “I was out on me walk today, love, when I came upon a cow
stuck in a ditch. Well, I scrambled down the ditch to help her out!” At his age! He still, at age 91, takes a
daily morning walk with his Border Collies Molly and Harry.
When
the opportunity came to hold Romania’s first World Hemophilia Day in 2005, my company
paid the expenses. And I invited Bill to come and be a guest. It was our first
meeting. Seeing him across the hotel lobby, I flashed a huge smile and we
hugged; I felt like I had always known Bill. He sat at the head table with the
other dignitaries, and spoke about his efforts to help those with hemophilia in
Romania.
Thistle and Martin
That
year we also had our first hemophilia summer camp, courtesy of Adriana
Henderson, who founded S.T.A.R. Children Relief, to help children in Romania. Adriana,
a Princess Diana look-alike, is a tour de force in making things happen in
Romania for children with hemophilia. She and I had collaborated together, and
indeed it was she who put together the entire World Hemophilia Day, single-handedly!
She invited me and Bill to attend camp. I marveled at first how Adriana pulled
everything together, seemingly so effortlessly and perfectly. And second, at
Bill—80 something years old and yet he donned a bathing suit and went right
into the Black Sea with the boys, playing, teaching them to swim. They loved
him. He had taught himself Romanian! He was able to speak with them.
Each night at camp we sat in the dinner hall with a glass of wine and got to know each other better.
Laurie and Bill at the Air Museum, Yeovil, England
And
when they had the talent show, he insisted that we sing “God Save the Queen.”
Well, that was “bloody” hard to do as an American (from Boston, no less!) but
we had fun. The boys loved all the joshing around.
Not
returning to the annual camp after that, I would have a hard time meeting up with Bill. So
I vowed to fly to England annually to visit. I’ve tried to keep that
promise, even if it is only for a day or so. I attended his lovely 90th
birthday party 18 months ago, at the Lamb and Lark pub in Yeovil, where I got to
meet his neighbors, friends and family. His daughter Emma lives with him, and
she and I have become great friends.
Grumman Martlet

On
this visit last week, I flew to London, arrived at 6:30 am (1:30 am EST) hopped the
Express to Paddington Station, took the Bakerloo “tube” to Waterloo Station, then
the Southwest train to Yeovil Junction, a two hour ride across the lush, green
carpeted countryside, checkered with fluffy sheep. Bill and Emma were at the
station to pick me up. It’s like no time had ever passed. We went straight to
his home, and in the orchard out back, were “Thistle” and “Martin,” two
adorable, wobbly-kneed kids, born just two days before. They’re an addition to
the ten chickens, two dogs, four cats and four other goats. We had a marvelous
visit, enjoying English tea, and immediately visiting the Air Museum nearby.

Three generations of flight

What
timing: the Air Museum is filled with vintage World War I and II planes,
including a Phantom jet, a Vampire jet and a Sopwith Camel (remember Peanuts’ Snoopy?). Bill
served in World War II, and of course, World War II’s anniversary was just two days before, September 1, 1939, when Hitler invaded Poland. Bill was in the
Signal Corps, and traveled the world as a young enlisted man. This visit gave him the
chance to share his war stories, and facts about WWII. We marveled at the
exhibits, but I marveled at how deftly Bill walked up the many, many stairs,
including the steep ones to go inside a full fledged, life-size Concorde!

I
think Bill must be the world’s oldest hemophilia humanitarian, and is easily
one of the most interesting people I know. He is easy to visit and be with:
witty, gregarious, fun-loving, kind, generous. One of my favorite people ever.
Laurie in front of a “Vampire”

Indeed,
I was so interested in his life, I asked him once to put it down on paper.
Turns out Bill is quite the writer too! I loved his story so much I published
it. I made 20 books for him to share with family and friends. He called it, “My
Life in the Royal Air Force.” It ends with the end of WWII.
Good byes at Yeovil Junction

I
think it’s time for him to write about his life post war, including what drew
him to work in hemophilia and make a difference in the life of so many
children. There aren’t enough Bills in the world; indeed, there couldn’t be.
When God made Bill Boughton, he broke the mold. There is only one, but I hope
to be like him when I am in my later years: able to travel, able to give, and
able to make a difference.























Great
Book I Just Read
Night
 [Kindle]
by
Elie Weisel
Considered
a classic now, Night is the true story of Nobel
laureate Elie Wiesel years as a Jewish teen who watches the horrors of
genocide unfold slowly in his community. He
documents it day by day, step by painful step, the depredation, starvation,
beatings, and separations. His mother and sister gone in one moment, his
struggle to keep his father and he together in a death camp, through almost any
means possible. Once a pious Jewish boy, he confronts God in his heart and
cries out: how can such horrors exist? Where is the God he once worshipped? This
easy-to-read book is deceptive as it packs a powerful spiritual punch. Perfect
reading for the week of WWII’s anniversary. Five out of five stars.

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