I am very happy to tell everyone that our ground-breaking book, A Guide to Living with von Willebrand Disease, the world’s first book on VWD, is back! We just released the third edition, and it is now available free of charge to those with VWD.
VWD is the most commonly inherited bleeding disorder. I wrote this book together with Reneé Paper, a woman with VWD, emergency room nurse, and powerful advocate. Together we decided on the topics, which include learning to cope with VWD, inheritance, the medical system, treatment, women’s issues, and health insurance. The third edition includes important medical and scientific updates about VWD. This 175-page book offers parents, patients, and healthcare professionals a complete resource guide featuring real-life stories.
As most of you know, Renée Paper dedicated her life to educating people about VWD. We were saddened to lose this incredible advocate in 2007, but I think she would be proud to know her book is in its third edition.
Funding for the development of the book was made possible through a grant provided by CSL Behring, a world leader in developing and manufacturing safe and effective solutions to treat and manage bleeding disorders.
So chapter leaders, program coordinators, HTC staff and home care reps, order online from LA Kelley Communications at https://www.kelleycom.com/books.html or call us at 978-352-7657.
This book is a fantastic resource for any one facing the challenges of VWD. Make Renée proud—read it!
About LA Kelley Communications, Inc.
Since 1990, LA Kelley Communications has been a world leader of groundbreaking educational materials and programs on hemophilia and related bleeding disorders. With more than a dozen books, numerous publications, and the oldest hemophilia newsletter in America, LA Kelley Communications remains a trusted source of practical information about raising children with bleeding disorders. Laureen Kelley founded the company in response to the need for practical consumer and parenting information on bleeding disorders. For more information about LA Kelley Communications, Inc., please visit https://www.kelleycom.com or call 978-352-7657.
About CSL Behring
CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant therapies worldwide. CSL Behring therapies are indicated for the treatment of coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease. The company’s products are also used in cardiac surgery, organ transplantation, and burn treatment, and to prevent hemolytic diseases in newborns. CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL Limited, a biopharmaceutical company headquartered in Melbourne, Australia. For more information, visit http://www.cslbehring.com.
Last week I brought you the exciting conclusion of Barry Haarde’s amazing Ride Across America to raise money for Save One Life, on a bicycle. Very successful and Barry celebrated promptly by going out the next day (and the next) to cycle 12 more miles each day in two more states!
Just two days later, the wonderful Jeff Browning kayaked across Long Island Sound! Jeff also has hemophilia, is age 49, and I mean, between him and Barry you haven’t seen such ripped bodies since Baywatch. What is it with these guys–hemophilia on steroids?
Nope. Just a passion to excel, be their best and to give back. Barry raised about $33,000 for Save One Life.
Jeff raised funds for the Connecticut Hemophilia Society (www.cthemophilia.org), a relative newcomer to the US hemophilia scene, but founded by people I know well, respect a lot, and who put their heart and soul into helping those in the small state of Connecticut.
Jeff started on August 11, at 9:30 am at Captain’s Cove, Bridgeport, Connecticut, and finished three hours later in Port Jefferson, New York to screaming fans.
Congratulations, Jeff, on mission accomplished! Kayaking, cycling, by land and by sea; don’t forget Chris Bombadier from Colorado, first guy with hemophilia to summit Mt. Kilimanjaro in 2012, and Jeff Salantai, second guy with hemophilia to summit Kili also in 2012. In fact, Jeff just summited Pico Duarter in the Dominican Republic, tallest peak in the Caribbean, to raise money for Save One Life! I haven’t even had a chance to chat with him yet…
It seems there is nothing guys with hemophilia can’t do these days with factor. So… you there with hemophilia reading this. What’s on your bucket list?
Good Book I Just Read Leadership is an Art by Max DePree
Published in 1989, some of the tenets might seem a bit dated, but DePree, CEO of a major furniture business, shares what were at the time unusual insights into leadership, which now may even seem standard. Empower your employees; let them in on the decision-making process; discover their talents and let them use those; a contractual relationship is a given in the workplace but focus on the covenant–the relationship between two people; look to the employees to see if leadership is successful. Relationships count more than structure; the stress is on servant leadership, and clearly defined vision. A quick read, you can finish in one night and come away with more opened eyes. Definitely worth a read! Three/five stars.
At some point during our 50 mile ride last Monday, which would
complete Barry Haarde’s epic ride across America, I had to confess to him that
while I was pleased that I was keeping up with him, a world class athlete, at
his pace, I had only learned how to clip in my bike shoes two days prior.
I would not have done this ride at all if it were not for Barry’s insistence
that 1) I could do it, and 2) I had to do it as president of Save One Life, the
nonprofit I founded and the cause for which he just spent 49 days in a hard
saddle, cycling from the Pacific Ocean in Oregon to the Atlantic Ocean by noon
on August 6, raising about $35,000. Barry’s ride truly was epic: no one with
hemophilia, much less hemophilia/HIV, had even attempted this. Barry attempted
and was victorious. And I was so privileged to ride alongside him for the last
Privileged but not worthy. I am such a cycling novice. Somehow,
Barry seemed to think that because I had summited Mt. Kilimanjaro last August
(if you read my blog from a year ago you know that I was pretty much dragged unwillingly
up that summit in the final 7 hours; the rest of the hike I did just fine), I was naturally going to be good at cycling. But my bike, an Orbea Diva, a very
expensive 50th birthday present to myself four years ago, scared me.
Yes, my bike scared me.
Its ultra light carbon frame, clip pedals and wacky gear shifting made it a totally different ride from the heavy, clunky but sturdy hybrid I had
been riding for years. When I first took the Orbea out for its maiden voyage, I turned to look behind me at traffic, in order to execute a quick U turn. I
promptly fell in the middle of Route 1 northbound in Rowley, Massachusetts—not a good place to be! I was mortified. I couldn’t get my darn feet out of the clips (you know something is bad when I say the word “darn”). I couldn’t get the feel of the bike; like a highly sensitive horse, the bike responded immediately to any slight shift in my body weight.
I couldn’t get the hang of the gearshift: what did the instruction manual mean by two clicks? I shifted gears like crazy, not knowing whether I was in
high or low or what. I rode the bike only twice that year, not enjoying either ride. I didn’t ride it at all the second year. My beauty hung on the garage
wall, ignored, like a forlorn trophy gathering dust. Last year I took it out a few times, scared, unsure and still not able to shift any gears. I marveled at the cyclists I saw, how they had mastered their steeds. I had little time to crawl back humbly to the bike shop and ask how to shift the gears. Soon, I told myself, soon.
Then came Barry Haarde, with a wonderful idea to raise money for Save One Life. Barry was so taken with our cause, that he proposed something no one had ever done. Save One Life would raise the money with him, and support his trip. He joined America by Bicycle and 49 other cyclists, and embarked on a well defined route that would lead him to my backdoor, practically: Portsmouth, New Hampshire, just 20 minutes up 95 north from my house.
And he wanted me to join him that final day, to cycle 50 miles to dip our wheels in the Atlantic Ocean in victory.
But I was not worthy to wipe his clip-in bicycle shoes!
So I started rehearsing, mounting that feather light frame,
wobbling on razor thin tires, jamming my feet helter-skelter into the foot contraptions,
eventually snagging the pedals, and off I went. The most I ever cycled at one
time was 12 miles. My first venture of the day left me saddle-sore, bow-legged
and bruised badly. This is fun?
Undaunted, on Sunday, August 5, I waited for the cyclists to roll in, in Portsmouth, New Hampshire. And in they came: most of them were in their 50s and 60s, silver haired speed demons on a gorgeous
collection of elite machinery: hip clothes, excellent physiques, and not the least bit tired looking, despite having cycled 76 miles that day. Gulp.
Finally Barry coasted up to the Comfort Inn, where we waited with hugs for his achievement thus far. He had a wonderful, fantastical faith in my ability
to do the 50 miles the next day. Should I tell him now about the clip in shoe confession? Maybe I should tell him that I still couldn’t shift the front gears
at all. That might have an impact on my ability to climb hills. Nope. There were other things to do. Barry’s family had secretly flown all the way up from Orlando to welcome him and surprise him and we were keeping this a state secret. They had all checked in about 30 minutes before.
While Barry was upstairs getting settled in for the evening, his mom Emily, age 84, snuck down stairs and waited in the lobby armchair, just as cool as a cucumber, but giggling with anticipation. When Barry reappeared, he walked right by her, sat in an adjacent armchair and began speaking to me about the day’s road trip. The surprise was getting anticlimactic when the son didn’t recognize his own mother (who in all fairness was turned away from him watching the Olympics on TV). I eventually had to suggest that the nice lady in front of him might come to dinner… and then, what a sweet reunion! Barry had hoped his family would join him and so they did: brother, sister, nieces and cousins.
Dinner that night was a celebration and ceremony of the achievements of a diverse group. Barry was riding not only to highlight the plight of the
poor with hemophilia in developing countries and to raise funds, but also had been devoting each day in memory of someone who had died of hemophilia/HIV. This included his own brother and brother-in-law, whose photos he would wear on his back the next day, the final day. I would spent a lot of time on Monday staring at that back, staring at those wonderful men who passed away so young.
As we left the dining room, Emily, bringing up the rear, leaning on her cane for
support, joked, “I’m the cow’s tail,” which made me turn and smile at her—this was a phrase I had not heard since my grandmother passed away in 1996. It was one of her favorite phrases. That phrase would dog me the next day.
Adrenaline was surging Monday morning! I hopped out of bed at 6 am, donned the very stylish cycling clothes. By 6:30 am we had gulped down many carbs at breakfast (oh my, could these guys eat) and straddled our bikes, ready to go. “Barry,” I timidly said, first confession about to seep out. “Could you check the air in my tires? The Orbea hasn’t been in the bike shop in… about four years.”
Oh yeah. It was at 20 pounds of pressure when it should have been 120 pounds.
Off we went! The day was cool, with thunderstorms predicted but which never emerged, thankfully. I was thrilled when we zipped away, over a
bridge, down the road. This was pretty easy.
Twenty minutes into the ride and I noticed I was really losing ground as Barry pulled away from me. Try as I might, I couldn’t recover. Wait—my bike was making an odd, rhythmic sound. Barry slowed down and I asked him about the sound. The front gear? I reached behind and squeezed my tire,
which was completely flat. A flat tire. Me. The interloper. Barry remarked he hadn’t had a flat tire in oh-about 2,000 miles, not since Wyoming. Me, 20
minutes into an historic ride.
We called the support van, which showed up immediately and changed the tire. This put us about 15 minutes behind everyone. What a difference when we began riding again! We zoomed along. Despite not being able to shift the front gear, it was permanently stuck in low gear, so I couldn’t manage any hills well.
By about 9 am we had our first pit stop (SAG, as they call them). Everyone gathered together, chowed down granola bars, peanuts, chips, fig newtons, oranges, replenished water bottles and joked about. Jeff and Al decided to switch bikes, not something recommended but after 3,600 miles, they must know what they are doing.
Off we went again; the miles passed easily and Barry and I enjoyed coasting by picturesque New England towns and back roads. Old Congregational
churches sporting white steeples, horses grazing in the fields, men fishing off bridges, rolling green hills and rich green trees. Barry couldn’t stop remarking about the lushness of New England compared to Texas, where he now lives. New Hampshire is a pretty state and typically New Englandish; it’s a state I turn to for adventure and fun. It’s here I go rock climbing and skydiving—and now cycling.
I confessed to him when I was feeling more cocky about my ability to master the clip in shoes just on Friday. Barry diplomatically didn’t comment.
The next pit stop seemed to come up quick: a bakery in downtown Exeter. Again? Really, guys? Bagels, donuts, coffee… I could have kept going
but it seems the team was eating its way across New Hampshire! Off we went again and this time no more stops…. So we thought.
The ride was going unbelievably well. Barry, having a rear view mirror attached to his helmet, knew the best times to pull alongside me and chat. Cycling is so much better when someone is along to chat with or pace you. I learned more about this remarkable man, the brother he lost, how he got
involved only since 2009 in the hemophilia community, how it took his brother’s death to push him to become a participant, then activist, and now, first person ever with hemophilia to cross the US by bicycle. With over 1,400 friends on Facebook, almost all related to hemophilia, Barry has become an icon in our community.
Barry announced my milestones: “Twenty-four miles, twice as long as your longest ride!” “Thirty-five miles…” and then “Just two miles to the
high school…” where we could congregate, do a group photo and then be escorted by New Hampshire’s Finest to the Atlantic Ocean at Wallis-Sands Beach for the wheel dipping ceremony.
And then disaster struck: Barry’s bike made a terrible noise and he pulled over to the shoulder, on a residential street with magnificent homes.
Only two miles from the “finish.” His chain had snapped. With characteristic Zen calm, he said, “That’s it. I’m done.” And then added ruefully, even smiling, “Figures. I’m always the underdog.”
I happen to like rooting for underdogs. He called the support vehicle, but wasn’t sure just where on the route we were. I thought it was North Street; Barry thought it was West street. The driver got the wrong street number and waited for us down the road somewhere. Precious minutes were ticking
by. At 11:45 am, with or without Barry, the team would cycle to the beach and dip their wheels. Barry just had to be there!
“Take my bike,” I begged. “It’s important that you finish!” But Barry patiently explained 1) it’s a girl’s bike (but it’s only 2 miles!) 2) the seat is too low (well, bend your knees!) 3) I can’t bend my knees due to arthritis (Oh. I felt stupid; all this time I never noticed that Barry couldn’t bend his right knee beyond 45 degrees. And he did this all across America on that knee?) 4) The seat is too low. (But…but….)
The support vehicle finally showed, and Mike, the driver, was none too pleased. Tension was mounting. He thought they couldn’t fix the chain in
time. Take my bike, please. Mike then took my bike, muttering “Where’s your personal support vehicle?” and jacked up the seat, as high as it would go, “without it snapping in two,” he warned. Barry sat on it; his feet couldn’t even clip in to the pedals. But off he went. It was amazing how fast he zipped off; before we even got into the van—with Mike frowning at an unregistered rider in the support van (me)—Barry was
We drove in to the high school, begged everyone to stop the photo shoot to wait for Barry and what seemed like agonizing minutes was really only
about 5. Barry wheeled in, looking like a teenager riding a little kids’ bike. He got cheers and whoops from his own teammates, and a few jokes. Amazing victory; seriously, the Olympics held no greater charm for me than this sweet moment.
After the shoot, the police positioned their cars and everyone slowly cycled to the beach, an armada of wheels, helmets and great big smiles.
Al, the joker (every team has one) kept declaring, “I want to be last!”
But Al, someone shouted, Laurie is! “Aw, she doesn’t count!” he quipped. And I agreed; me, the cow’s tail, didn’t count. I only did 50 miles,
and these cyclists did over 3,677! 50 days to my one day!
A huge crowd was waiting at the beach, as they knew to expect the riders. People of all ages, applauding at their achievement! Present too were
Save One Life staff and Janie Davis of Baxter Healthcare (Baxter sponsored the ride) and even a few local families who so kindly came to give their support.
We dipped our wheels in the chilly Atlantic, amazed at how this day turned out. It seemed no obstacle, no matter how close to the finish, could
stop the incredible Barry Haarde. His mom, standing by his side in the brilliant sunshine, beamed. So proud of her son, as she should be. So was I; so were we all.
Congratulations to Barry Haarde and to all the cyclists that day; I do believe you don’t know who you are until you know what you can do, and
pushing yourself to near-extremes is one way that adrenaline junkies like Barry and me find out. I didn’t know I could do 50 miles on a bike I was afraid of. Barry didn’t know he could do over 3,677 having hemophilia, HIV, a half-useful knee. I think when you attempt feats with a purpose, a cause greater than yourself, a cause that helps others less fortunate, you find strength within, and resources within, you never knew could be possible.
And just to prove it, Barry pushed me some more. You’d think he’d want to rest after traversing the US? No way: 12 more miles the next day in Massachusetts; up to 6 am Wednesday to drive to Maine and do another 12 miles all along the gorgeous coast of York. I couldn’t think of a better way to share his victory. And I can’t wait to do the next ride with him.
Special thanks to Baxter Healthcare for sponsoring Barry’s ride! Thanks to all who donated!
Book I Just Read
The Road Less Traveled: A New Psychology of Love, Traditional
Values and Spiritual Growth by M. Scott Peck
An appropriate title to read after this road trip, but not nearly
as exciting. Written in 1978, the book explores the meaning of love through the
eyes of a psychoanalyst. Love, as he defines it, is a journey that helps
another grow spiritually. Peck delves into meanings of love and discipline,
expressions of love, and shares vignettes of how people overcame emotional
difficulties. He describes the difference between love and being “in love”—which
was well written. I read this in the 1980s and thought it was brilliant; rereading
it again, I now see it as dated, fairly academic and dry, and limited. Who can
really say what love is, when there are so many types of love? The first half of
the book is more about love and mental health and taking personal responsibility for navigating life—good stuff; the second part gets into spirituality, God,
science and Christian values. Some of his take on religion vs. science is a bit
head-scratching. I found the first half of the book more readable and useful
than the second half, which was muddled and lost focus. Two out of five stars.
Last weekend I was enjoying a wonderful annual meeting with the Florida Hemophilia Association in Boca Raton. On Saturday morning we presented our insurance symposium “Pulse on the Road.” Pulse is our insurance magazine for the bleeding disorder community, which you can download free of charge from our website.
Since our last symposium in Tennessee, of course, the Supreme Court weighed in on the Affordable Care Act, the healthcare reform bill that was initiated by the Obama Administration. Jim Romano, Director of Government Relations and Advocacy at Patient Services, Inc. and one of our guest speakers, told the audience that on June 28 the Supreme Court ruled 5 to 4 upholding most of the ACA. He pointed our four salient highlights for the community:
– The Individual Mandate is constitutional: it’s a tax and Congress has taxing authority
– Congress cannot coerce states to expand Medicaid
– 4 justices voted to overturn the entire law
– More lawsuits are moving forward
The key message for our community is clear: we need to keep vigilant (something we do well!) and monitor not only what goes on in Washington (it ain’t over by a long shot), in our own states, and in our own policies! A lot can happen between now and November, and then even after the presidential elections.
To help consumers stay vigilant, Michelle Rice, public policy director, National Hemophilia Foundation, introduced a fabulous insurance toolkit that allows families to compare different health insurance plans in an apple-to-apple way. The Florida audience was sharp; they dug right in and while it’s not easy to do math at 10 am on a Saturday morning (in Boca Raton, of all places) they crunched numbers and many were able to see which faux plan would be the best for the hypothetical family portrayed. Everyone commented on how useful the kit is.
Remember, the individual mandate of the ACA requires that every American have some form of insurance. This will mean that many citizens, even who already have insurance, will need to select between multiple options.
So sharpen your pencils! Pulse on the Road’s next stops are in Maryland October 6 and Massachusetts November 3.