Wheels for the World!

Last year I summited Mt. Kilimanjaro to raise money for the nonprofit I founded, Save One Life. We’re starting to corner the market on “adventure fundraisers.”  This year? We conquer the
American highways with “Wheels for the World”!
On Monday, June 18, Barry Haarde, a 46-year-old Texan living successfully with hemophilia A,
HIV and hepatitis, from Texas, will start a 3,667 miles coast-to-coast bike ride from Astoria, Oregon to
Portsmouth, New Hampshire to raise funds for Save One Life. This is the first time someone with hemophilia will bike across America for charity!
Save One Life is a Massachusetts-based international nonprofit that provides direct financial aid to impoverished people with bleeding disorders in developing countries. Founded in 2001, Save One Life provides one-to-one sponsorships for almost 1,000 beneficiaries in ten countries. In addition, it provides funding for camps, scholarships for students and support for outreach to locate patients in rural areas. Barry is one of our dedicated sponsors.
Please help support Barry!
Pledge by the mile or by the state; make a one-time donation or sponsor a child—all proceeds go towards operations and programs to help Save One Life’s mission.  Thanks to Presenting Sponsor Baxter Healthcare International for helping to make this possible!

World Hemophilia Day

Today is the birth day of Frank Schnabel, a California businessman who over 60 years ago founded the World Federation of Hemophilia. All across the globe today, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering.

We are divided only in access to treatment. Up to 75% of the hemophilia global community has no access to factor. We are trying to close the “gap,” as the WFH puts it, by donating factor medicine to those in need.

Help continue to unite the world hemophilia community. Donate unused or unwanted factor to Project SHARE, or sponsor a child with hemophilia in poverty through Save One Life. Give back to those in need, and to honor those who have gone before us.


Young Man on a Mission

I love getting older. Really! Part of the joy is watching all the young boys I have known with hemophilia over the past 24 years, both here and abroad, grow up. I just went out to lunch in Waltham with a friend today, which is not a town I normally visit, and who should walk into the restaurant? A mom of a boy I have known with hemophilia since he was 2. We chatted for a bit. Her son is in college now, like mine. I get a warm glow thinking of how lucky our sons are to survive despite this disorder.

Not all children with hemophilia worldwide are so lucky. And you normally don’t expect young people like our sons to think of such weighty matters; after all, they have college, jobs, video games and girls on their minds. But one young man stands apart from the crowd, and I have known him and his family for years and years. Diane, his mom, is one of our biggest sponsors for my nonprofit Save One Life. The Horbacz’s sponsor 30 children! And next week, they journey to India for the first time to meet their sponsored children.

Not only that, but Matthew, only in high school, has decided to try to help us hit 1,000 sponsored people with hemophilia through his school.

On the Save One Life website, Matthew writes: “I cannot say that I ‘suffer’ from hemophilia, but the impoverished children in developing countries truly do suffer from a condition that could be so easily improved through better medical care and access to medication. Now if one of these kids falls and hits his knee, do you know what he does? Nothing. Medication is not available, and he may not even have access to ice. Rather than giving himself an infusion, he has to wait it out and pray. For those who are lucky enough to not know what internal bleeding feels like, let me tell you that, even with proper medication, it’s NOT a pleasant experience. Your joint will become swollen, your movement is severely restricted, and it’s very painful. Now imagine if this happened to you and there was absolutely nothing that you could do about it. You knowingly had to endure the pain and suffering while kids in wealthier countries like America who “suffer” from the same exact condition are able to live completely normal lives.

“Kids in poor countries are unable to live normal lives–many do not even make it past their teenage years. Through Save One Life, for $20 per month, you can help save the life of a child with hemophilia with food, medicine, and education. After discovering Save One Life and reading about the suffering children, it inspired my family and me to sponsor a child. It started out as just one child, but over the years that number grew. Today we proudly sponsor 30 children.

“This April my parents and I are going to India to meet the children we sponsor and bring life-saving medical supplies. However, seeing children who do not yet have sponsors will be a most painful experience. How can I go empty handed to visit these kids in great need? Well, I don’t plan to. My plan is to match each kid I meet with a sponsor. Therefore, I am asking for your help. Please help me meet my goal of finding 35 sponsors before April 4th. Please consider sponsoring a child or possibly making a donation in support of my mission to India. Please help Save One Life. Together, we can make a difference. Thank you and God Bless.”

Matthew represents the future of America, and this life-changing visit will surely plant seeds that will sprout in the years to come. The power of one young man with hemophilia to change the world! It’s humbling and admirable. Visit www.SaveOneLife.net to learn more and to support Matthew’s mission.

And ask yourself: what have you done for a suffering person lately? What’s your mission in life? Find it and live it; take it from Matthew. There are many ways to directly help those who suffer, through Save One Life. Good luck, Matthew and God bless you!

Great Book I Just Read
The Island of Dr. Moreau by H.G. Wells

The gifted Wells has created an unsettling sci-fi masterpiece that impacts at many levels. Superficially, Pendrick, a British scientist, is shipwrecked on a remote island where he finds strange creatures, combinations of man and beast. Eventually he meets Dr. Moreau and his assistant Montgomery, who are conducting horrible vivisection experiments on animals. Eventually Pendrick learns they are attempting to transform animals into human beings. Pendrick watches in horror at the unfortunate outcomes, which seem a mockery of nature. The creatures are subservient to Moreau, who rules them with “Rules” and whips. With the references to hairy beasts, dark skins and intelligible speech, Wells clearly makes an indictment of the British Empire, subjugating and attempting to civilize the “lesser” people of the world in India and Asia. It also is a statement on evolution: can we evolve “down” as well as up? And finally, humanitarianism. In trying to make the beasts into men, is Moreau trying to make the animal culture/nature into something better, but also something it is not? Moreau plays God and attempts to alter genetic codes, nature and destiny. Extremely well written and very hard to put down. A literary classic. Five/five stars.

What on earth are you doing for heaven’s sake?

Remember this slogan? It was found on bumper stickers in the 70s, from what I recall. Maybe this was my first attempt at editing: were they trying to say, “What on earth are you doing, for heaven’s sake?” Like, “Are you crazy or something?” Or maybe, “What on earth are you doing for Heaven’s sake?” as in, what’s your purpose here on earth before you go to Nirvana, Heaven or get reincarnated as an insect?

I thought of this bumper sticker when I read the essay submitted to me by friend and colleague Adriana Hendersen. She is a one-woman agent for change in Romania, and has changed the lives of dozens of boys forever. This is excerpted from the November issue of my newsletter PEN. In case you missed it, read on…

Why Am I Here?

“Why are we here?” is a philosophical question concerning the purpose of life.

“I have asked myself many times why I am here, but with the emphasis on here, in the US.

“In 1970, I seemed destined for a different life, in Romania. My father was sentenced to spend his life in a communist prison for criticizing the government’s decision to deny the family the right to emigrate; and we, his children, were supposed to be sent to reeducation school. But we didn’t know that our situation had been receiving international attention. Following pressure from the United Nations and various churches, the Romanian government asked us to leave Romania immediately. It was a magnificent, magical, miraculous exit. We were the first family in Romania to leave legally, not only with a passport for emigrants, but also carrying an American green card.

“As a young girl I never once looked back, or even thought about what I had left behind. I thought I would forget Romania, and hoped I would forgive. I pursued everything the US offered: freedom and opportunity. I had a wonderful family, a big house in the suburb, cars, trips around the world, a closet full of designer clothes. Most important, my family was healthy. Yet it felt like something was missing.

“When the Iron Curtain fell in 1989 and images of the harsh realities in Romania besieged the world, I could not ignore my country and people anymore. The question “why am I here” started to nag me.

“As a child, all I could think of was survival. Now, with my newfound freedom came a desire to succeed. When success wasn’t enough, I started to look for significance. I wanted to give back, to make a difference, to acknowledge the blessings that were bestowed on me and possibly see if there was a reason for my being here.

“I was at a loss about what I could do, and for years I looked for some cause I could identify with. Then I met a woman who was looking for medicine to help a boy with hemophilia in Romania; he needed corrective foot surgery to walk. I barely knew anything about hemophilia, and the little I knew was mostly inaccurate. After a quick and shocking lesson on hemophilia, I began a quest to find the miracle medicine. It wasn’t easy, and the more I searched, the more I lost hope. I made hundreds of phone calls, all over the world, trying to source any kind of donation. It was a test of endurance and tenacity. I had one phone call left to make, the call to Project SHARE. They immediately shipped the factor, and the rest is history. That was more than 10 years ago.

“Since then, I know why I am here. The boy had surgery and his wish was granted: he is now walking. That’s when S.T.A.R. (Start Thinking About Romanian) Children Relief was born. S.T.A.R. is a multipurpose organization with an emphasis on healthcare and a focus on blood disorders. Through S.T.A.R.’s efforts and donated factor concentrate, many Romanian boys and adults with hemophilia have had their lives improved or spared. On World Hemophilia Day, April 17, 2004, S.T.A.R. organized the first-ever hemophilia symposium in Romania. And S.T.A.R. organizes and hosts Camp Ray of Hope, in its sixth consecutive year this past summer, the only camp for children with hemophilia in Romania.

“S.T.A.R. is also Save One Life’s partner for Romania. We have 59 children and adults with hemophilia sponsored through Save One Life. I know most of the beneficiaries personally, and have visited them at home or seen them at camp where they play with carefree enjoyment. I get to see them smile and hear them laugh. It feels awesome to be so intimately and personally involved.

“I never thought I would be involved in charity or volunteer work. I don’t have the personality. I am shy, withdrawn, introverted, not the type that would organize international conferences and fundraise for summer camps. It’s said that we, in the nonprofit world, change other people’s lives. That’s true, but in the process, our lives change too. We have a purpose, our life has meaning, we do things we thought we could never do. That’s a terrific feeling! We give a little, but we get a lot back.

“I know—Romania is close to my heart, and I have a vested interest in helping my people. But to anyone who, like me, is searching and wondering if there is something more than just the fleeting pleasures in life: if you want to make a difference or improve a life, while you improve your own, consider sponsoring a child. Look at the Save One Life website, where many with hemophilia are waiting to be sponsored. Pick a country, pick a child. Put a sparkle in those eyes that look so hauntingly and sadly at the lens. Bring a smile and a chance for a better life. It’s a small gesture that will bring priceless rewards.
I know why I am here. Do you?”

Maybe the bumper sticker needs to simply say: “I know why I am here. Do you?”

Adriana Henderson is founder and president of S.T.A.R. Children Relief, a nonprofit dedicated to helping Romanian children in need. She was born in Romania and immigrated to the US, where she has lived for the past 40 years. She is a graduate of UCLA, and lives in North Carolina with her husband Tom, who often helps with her charitable work. They have two daughters. Visit www.starchildrenrelief.org

Kilimanjaro, Days 1-3 “The Enchanted Forest”

Our African travels now bring us to the Main Event—the Kilimanjaro climb. Up 19,370 feet in harsh weather in the middle of the night to raise money for Save One Life, our nonprofit child sponsorship program. Nine other people are now gathered Friday night in the lounge of the Kibo Palace Hotel in Arusha, Tanzania, to listen to two men, our guides, on whom our lives will depend, speak about our climb. With me are: my daughter (17), Eric Hill, president of BioRx and son Alex (14); Julie Winton, RN, BioRx; Jeff Salantai (31), BioRx; Neil Herson, president of ASD Healthcare and his two daughters Kelley (16) and Brittney (20). The only problem is my gear is missing, as is Eric’s and Alex’s. Eventually mine shows up much later that night (after many phone calls), but Eric and Alex are completely without clothes and gear. They will need to rent gear from the outfitters, Team Kilimanjaro.

We were up at 6 am on Saturday at the hotel, and ready by 7 am. It’s a lot of packing to think about, being gone for 6 days in the wilds of Africa! We don’t really know our guides yet; there’s just one guy with a big smile that seems to connect with everyone. On the bus Julie got everyone to sing our theme, “Ain’t No Mountain High Enough”! She likes the Marvin Gaye version while I like Diana Ross’s. There’s lots of chattiness; everyone is excited.

Machame gate

It takes 90 minutes to get to the Machame Gate. Along the way we saw rural Tanzania, how poor people are compared to US standards. We stopped half way at a convenience store, where most of the team bought little bracelets from a street vendor. Soon we are at the Gate. This is where it all begins! We filed out, and saw pandemonium. There were hundreds of people swarming. Porters lingered everywhere, big bags of gear sitting in the muddy and dusty roadway, other hikers of all nationalities… we wait about an hour to complete paperwork. It’s a bit confusing. We start putting on our hiking gear—gaiters, backpack covers—while waiting. The air is chillier than I expected. Finally we’re done and we start. It seems surreal: all our training, planning, fundraising, and here we go!

Our lead guide is Jonas Gerald, tall and impassive, assisted by Jacob Slaa, the guy with the big smile, and Frank, who perpetually smiles. We hike today from 12:30 pm until 6 pm, with one stop for lunch. I am so surprised when on the trail we pull up to a table, chairs, and wonderful food, in the middle of a forest!

We will go through 4-5 ecological zones on this climb. Today we hike through the forest. It is beautiful: nice and cool, moist, on a defined trail. There is huge green moss growing up and around the trees like some fuzzy, green sloths. Lichens hang down from other trees like trails of lace on a Victorian gown. It seems an easy hike, not too steep, a few rocks, and a set trail.

Julie is amazing: she thinks of everyone else on this trip. Today she has snacks for everyone and keeps everyone hydrated. Even the guides and porters get snacks!

14-year-old Alex, the youngest, is a strong hiker, as are Kara Ryan, and Kelly and Brittney Herson. I had wondered about the Herson girls and how they would fit in, as no one really knows them, but they are super sweet, strong, and soon, everybody loves them and their can-do attitude! We are fortunate to have a diverse group of 10 people who all get along well with one another.

We break for our first camp around 6:00 pm at the Machame Hut. We have a mess tent with a table, so we can all have dinner together. Dinner is hot veggies, celery soup, potatoes and fried fish. I learned Sama hani means “I’m sorry” (for stepping aside when porters brush by us) and Twende means “Let’s go!” (used often by our guide, Frank).

It’s fun to go to bed in our tent, with our sleeping bags. It’s been so long since I’ve done something like this, and I love it! And we are tired; we climbed from 6,000 feet at Machame Gate, to 10,170 feet tonight. We wait to see who will first feel the effects of altitude.

Day 2 Sunday, August 7, 2011 “Into the Mist”
I guess I didn’t sleep too well. I fell asleep from 9:30 pm to 11 pm, but the porters kept us awake till 1 am or so with their animated chatter. They work very hard; I’ve never seen anything like it. They are efficient, powerful and zoom by us on the trail laden with all our tents, food for 6 days, sleeping bags, and clothes, all bundled into sacks, which they balance on their heads. These porters are often young guys, slim, and often without great gear themselves. Some wear sneakers with tears of holes; they are gloveless in the cold and wear regular street pants. I was up until 2 am and then slept off and on. I had strange dreams.

“Young” Frank (not the guide), a sweet, 20-year-old boy with a shy smile, starts our day with a cup of hot tea. It’s so nice! Ellie, another nice young man, tags along to add sugar. This is luxury! We sip hot tea in our sleeping bags and begin our day. I put on make up in the morning sunlight, which makes Eric laugh out loud. I will abandon this practice the very next day. Contrary to my belief, it’s not all about how you look on Kili. We are all sharing a small stand-up tent for a bathroom, which has a portable toilet in it. If you think about it, it’s kind of gross, but honestly, when you are there, it seems perfectly normal! We are even grateful for this small luxury!

Breakfast is eggs, toast, jam, and porridge.

The camp is crowded with other groups, including a loud Japanese or Chinese delegation. It looks like a refugee camp here!

We start out earlier than most groups, at 8:06 am. The climb today takes us away from the forest and into the heather, or moorland zone. The topography changes dramatically. It’s cool, and mist rolled in above us and around us. I feel surprisingly great. We will climb to 12,461 feet when the hike is done. We move more slowly today, with Alex the guide leading the way, steadying our pace. There are lots of rocks on the trail and narrow turns and ledges. The trees are beautiful! At first I think we are in a scene from the “Wizard of Oz,” when they come to a poppy field. Then later on, I think this is like a scene from Peter Jackson’s “King Kong.” Very primordial, with lava rocks and giant boulders.

A popular plant we see is the lobelia deckenii, or what our guide calls the “Antifreeze plant.” It closes up tightly each night to protect its leaves and unfolds to catch the morning light.

The air is crisp, cool, and moist; we don’t sweat much today. But the dust! The air is filled with baby-powder fine dust that infiltrates everything. Our nostrils are black, faces were smeared with dirty streaks, and our fingernails are ringed in black.

Up, up, and up we go. There is still a clear trail, which I didn’t expect. Sometimes the trail is made of stone steps, winding, twisty, steep. Neil falls further behind us, and I am next to last as I am kind of slow. Jacob stays with him while the rest of us push on. The air is thinner and it is harder to walk at 12,000 ft.

Julie and I hang out together, walking slower than the rest. I am also taking photos, which slows me down. The scenery is spectacular! We need to stop now and then to eat, take water. The porters truck past us on the trail, their loads frighteningly heavy. We are constantly shouting, “Porters right!” to let them by us.

Lunch break! We have peanut butter sandwiches, fruit and avocados, and carrot soup, which is delicious! Then they bring out pasta and sauce! I couldn’t eat any of that.

We walk slowly the next hour and a half through the Shira Plateau to the next camp. This is when we get our first real look at Kibo, the dramatic summit of Kilimanjaro, rising up above the rocks, blue in color with clouds challenging its summit. At one point, I am totally alone! Not another human being in the place. It is glorious. I look all around, and hear nothing nor see anything. Just me and Kili. I wish it could have lasted longer. Privacy is one thing you don’t get on the popular Machame route.

I stroll into Shira Cave camp and am greeted by the others. I wash up for dinner and everything is black. My legs and arms were filthy black.

Neil arrived around 4:50, a full 90 minutes after we arrived in camp. I bring him hot tea while his girls put him in his sleeping bag. I also brought him a Cliff bar for fast energy. When Julie comes on the scene, she takes charge to help; altitude sickness is serious and must be dealt with. We are so blessed to have Julie with us, as a nurse and compassionate friend!

Day 3 Monday “Walking on the Ocean Floor”

I took melatonin last night and had a great night’s sleep, despite the cold. I am shocked when I unzip my tent to see frost coating everything. I left my boots outside and they are frozen today. Huge white-necked ravens sit in the small trees near us, cawing for some food. (Which of course I toss to them) Sun strikes the far away ridges of the mountains, which are separated from us by clouds and looked beautifully surreal. We are actually looking down on the clouds! Breakfast is on, and I’m hungry. We had porridge, toast, eggs and jam.

After some discussion, it’s decided that Neil will go back down the mountain today. The rest of the trip will only get harder—and higher. It’s a loss to our group, as Neil was such a driving force behind our fundraising and so motivational for us all.

Today will be a long day of climbing, about 7 hours. We will go to 15,000 feet, then descend for the evening back to 13,000 feet, to help us acclimate. We hit the trail by 8:06 am and walk for two hours. Within 10 minutes we can feel the 12,000 ft. altitude. Our quads burn and our legs feel heavy. We walk in single file quietly, shouldering our back packs, following a trail that leads us toward Kili, heads down, like a herd of burdened, untethered pack mules. Frank is in the lead, walking pole, pole (slowly, slowly). It’s cold, but when the sun comes out, layers come off quickly.

We stop frequently as we tire easily. We sip water from our Camelbacks, and slow our pace. I want photos so I hang back a bit from the others. The terrain is more sparse now, just scrubby bushes with so many rocks! Some of the monoliths are huge, standing erect like those statues at Easter Island, keeping vigil over this ancient mountain. Small boulders dot the lunar-like landscape, with clumps of red straggly moss hanging off of them. It’s easy to remember now that Kilimanjaro is a volcano, and what I see around me were lava rocks from inside the volcano, deposited here long ago after an eruption.

I feel at times like I’m walking on the bottom of an aquarium, which someone tried to decorate to simulate the ocean floor. It occurs to me that this area may have been submerged in water millions of years ago; like the high mesas in Canyon Lands, Utah, where you can still see salt beds, remnants of a receded salt ocean millions of year ago.

It isn’t a difficult hike, but tiring, due to the thin air. Eventually we stop for lunch near the Lava Tower, and I find myself staring blankly. Lunch is great: hard-boiled eggs, sandwiches, fruit, cornbread, avocado, and tea. We don’t rest long. Today we climb to 15,000 feet, and then camp at 13,000 feet. So far, no altitude sickness.

After lunch we descend down a very steep, rocky path, into the Barranco Valley, and we trek through the alpine desert. It’s beautiful—for a rock lover like me, this is heaven. The rocks are enormous, pitted and some are shiny black. Mist rolls in and it becomes very chilly. The topography looks like a scene from the movie Lord of the Rings. As we hike, we feel like characters in the movie. The air becomes dramatically colder and we all threw on more layers and rain gear. I think the temperature might be freezing, until I step in some mud and see a little rivulet. The wind chill makes it feel freezing.

The group soon forges ahead, leaving Julie and me with Jonas. I enjoy this walk the most. The alpine desert is hemmed in by ridges of Kilimanjaro, dotted with lava rocks, and decorated with the most unusual looking trees. We laugh that they look like those from a Dr. Seuss story, such as the Lorax. Truffula trees! They also at times remind me of saguaro cactus. These are the giant senecios. Hard to believe that they’re cousins to the daisy. I thought I might hear songs run through my head while gazing at such scenery, but no. My mind is silent, in the moment, observing and taking it all in.

We arrive at Baranco camp, where a few other groups await. Everyone is tired, and sits about doing their own thing: Jeff napping on a rock; Kara writing in her journal. I hike ahead of Julie and Jonas and had a bit more time to walk alone in solitude, which made me happy. This camp sits in a little valley, and is beautiful.

What will tomorrow bring? It’s much too cold to change clothes or even wash up. Washing in the hot basin that Frank brings each morning is great, but there is nothing to dry oneself on. Thankfully we brought little towels that seem to dry quickly. We do our best to stay clean!

Tomorrow, Day 4, will bring us to the foot of the summit path! More to come….

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