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.

Ride to Remember 2014: Honoring the Fallen

Whenever I see an
adult on a bicycle, I have hope for the human race.
~ H.G. Wells
Hope for the
human race was abundant Saturday morning downtown in Springfield,
Massachusetts, where 240 cyclists of all ages, races, genders and professions
lined up to cycle 106.7 miles to the State House in Boston. This was the second
annual “Ride to Remember,” to honor fallen police officers and to raise money
for their families. “Fallen but not Forgotten” was the slogan, printed on the
back of the 240 riders’ uniform shirts, colored police-blue.
Laurie, mother Eileen Morrow, brother Tim
I scanned the swelling crowd at 6:15 am: the riders’ adrenaline flowing; the air
chilly and moist; the bikes being unloaded and tires pumped; the massive
American flag unfurled from two cranes in the semi-dark; the dawn just breaking
over what would be a perfect-weather day for an endurance ride; support buses queueing
up and repair vehicle positioned in place.
I was riding with
my younger brother Tim Morrow, a 30-year veteran of the Springfield Police Department,
now a K-9 officer, his wife Lee, on her first “century” ride, and my boyfriend
Doug, a marathoner and endurance athlete. The riders were police officers,
fire fighters and family members from all over Massachusetts. 106.7 miles later we
would be at the State House for a ceremony to honor the fallen.

The ride begins!
The Ride to
Remember honors officers Kevin Ambrose and José Torres, both killed in the line
of duty two years ago. Kevin was the first Springfield officer killed in action
in 25 years; he was just about to retire, but was killed while helping with a
domestic abuse case. It’s a chilling reminder to those of us who take the law
enforcement for granted about how dangerous these jobs are.
Despite the nippy
air and early time, I was grateful to see my sister-in-laws, Kathy and Polina
Morrow, who came to hug us and wish us good luck. And my 82-year-old mother,
Eileen Morrow! She probably should have been riding with us, as she has enough
energy and willpower!
After pumping our
tires up and joining the bulging street of riders, I looked down and saw bad
news—my front tire was flat! I jumped off, ran to the far back of the crowd
where the vehicles were, Doug following, searching for the repair vehicle. Meanwhile
the clock was ticking as the riders were clipping in, ready to. I finally found
Steve, the repair guy, and in 30 seconds he had me ready to go. Clip-clopping
on my cleats, juggling my bike, sprinting back to the riders… but they were gone.
I hopped on my
bike and Doug and I pumped hard to catch them. It was exciting, because we
had to slice right between a parallel line of police motorcycle escorts until
we became the last of the riders in the group. It was cold; by mile 10 our
hands were stiff, noses running. I found that I couldn’t shift to the big gear because
my left hand simply wouldn’t obey—too cold!
 
The first leg, to
mile 18, was the hardest for me, incredibly. I had spent the last few days in
Washington DC at the NHF event, and while I hit the gym once, I didn’t feel
warmed up; the cold air wasn’t helping. After the first break in Palmer, MA,
where the support staff served boxes of bananas, bagels, Clif bars and Gatorade, we
fueled up (you must keep eating throughout the ride), stretched out and within
15 minutes were back on the road. We immediately hit a hill; there would be
many tortuous hills on this long ride, which tested not only your aerobic
capacity, but your quad strength, and your mental fortitude. Honestly, I kept
hearing in my head, “I think I can, I think I can…” Tim and Lee were somewhere
ahead of us; Doug stayed in the large gear (the hardest) the entire 106.7 miles, and powered up every
hill. That. Is. Crazy.
Ouch
Life is like a ten speed bicycle. Most of us have gears we never use.  ~ Charles M. Schulz 
There would be
five rest stops. But you must also drink a ton of fluids and these catch up
with you eventually. At one forced stop in the middle of a narrow country road somewhere
in mid-Massachusetts, to wait for the huge group of riders to catch up with
each other, I decided, like a lot of riders, to use it to my advantage. We
hopped off our bikes and headed for the woods. The men went one direction to
the edge. I delved a bit deeper into a more remote spot, where I thought there
were an awful lot of thick vines. Vines? I tried to pull them away and step over
or through them—ouch! Rusty barbed wire. One sliced my knee a little; I
thankfully didn’t get a piercing where none was desired and I headed back. A little drama is good for the story and the medical
crew was delighted to have something to do.
When the spirits are low, when the day
appears dark, when work becomes monotonous, when hope hardly seems worth
having, just mount a bicycle and go out for a spin down the road, without
thought on anything but the ride you are taking. ~ Sir Arthur Conan Doyle
Author of Sherlock Holmes
Back on the road
and the rest of the ride was wonderful. I hit a little “wall” at mile 40, just
feeling like I could easily nap, but oddly, by mile 60 I was revved up and
flying. We took hills doing 15 mph at times, and flew at 32 mph downhill. We
had a police escort the entire way, so were well protected from cars. All
traffic was stopped as our entourage sped through intersections, town centers,
crossed highways, thumped over railroad tracks. I took only one spill when, to
avoid crashing into another cyclist, I couldn’t complete a sharp left turn to
cross railroad tracks at a 90 degree angle. My tire went right into the track
groove and I gracefully slid to the ground. No harm done. Doug and Tim had a
crash—together! Other riders had several crashes and there were many chains
that fell off.
By 5:30 pm, we
rode into Boston, past the famous Citgo sign, with crowds along the way
cheering us on. We swarmed together like bees as we pulled into the State House
and congratulated each other. I was so proud of Lee, who had only taken up cycling
this past spring. This goes to show what training and determination can do
(though she seems to have some natural talent). And Doug was outstanding, and
now hooked on cycling. We’re going to sign up for some classes this winter with
a pro to learn how to improve our performance. 
And I’m proud of
my brother Tim, his K9 partner Cairo, and his brotherhood of police officers
and firefighters (my older brother Tom Morrow is also a firefighter!): what wonderful public servants and what better way to tell
them, to show them, how proud we all are: spending out day on a physically grueling
ride, with such positive feelings, surrounded by some of the most honorable
people you’d ever want to know. 
Laurie, Doug, Lee, Tim
Sistas!
It’s a lot like our hemophilia community, with so many of our
brothers lost to us forever due to someone else’s negligence, there are so many
fallen, but never forgotten. I think of Barry Haarde and his remarkable Ride Across America, doing an average of 120 miles a day—a day! Think of it! For 30
straight days. It seems humanly impossible, until you realize that when you
have a passion, a cause, an injustice to fix, and some training and a goal,
almost nothing is impossible.
Ever bike? Now that’s something that makes
life worth living!…Oh, to just grip your handlebars and lay down to it, and
go ripping and tearing through streets and road, over railroad tracks and
bridges, threading crowds, avoiding collisions, at twenty miles or more an
hour, and wondering all the time when you’re going to smash up. Well, now,
that’s something! And then go home again after three hours of it…and then to
think that tomorrow I can do it all over again! ~ Jack London
, Author

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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