Save One Life

Grand Evening for a Gala

It was a chilly and moist evening in
New York City on September 29, perfect for a fall kick-off and a good reason to
warm up with friends, colleagues and a celebrity to honor 15 years of Save One
Save One Life was founded in 2001, but
my idea to start a nonprofit to help the world’s children with hemophilia who
live in poverty had been kicking around for at least two years. We are now up
to over 1,500 served over 15 years, and we have great plans to expand our help even further.
It was fitting to hold our celebration
in New York; to give credit where it is due, it was a New York mother of a
child with hemophilia, Lisa O’Connor, who wrote to me back in 1999, on a piece
of yellow-lined paper (yes, people did that at one time!) to suggest we start a
Save the Children-like program. I loved the idea, and the letter coincided with
a trip to Pakistan, in which I sat in the home of an extremely poor family:
two rooms, no kitchen, no plumbing, no electricity, two small children with
hemophilia. The father simply wanted extra money each month to send his son to
a good school, where he would be protected, and learn English, to get a good
job. Then he could buy factor. The cost? $20 a month, he told me. The idea
became a plan.
This evening, so many of our sponsors
and colleagues came out to share our 15 years. I saw so many long term
community friends, some going back 20 years!
Cyclist Barry Haarde

Held at the Manhattan Penthouse, high
above the bustling city below, we gathered to have a lovely dinner, distribute
awards and honor our volunteers and supporters, and to welcome two very special

First, no surprise, we honored yet
again the amazing Barry Haarde, for his fifth cross-country cycling odyssey to
raise funds for Save One Life. The 2016 journey took two months this time, and
saw Barry traverse the US from west coast to east coast, and then from north to
south! I managed to hop off Kilimanjaro in time to fly to Key West, the most
southern point in the US, to welcome Barry on Route 1, mile 0. Barry takes it
all in stride, but his efforts are Herculean. He has raised awareness as well
as over $200,000 for Save One Life over his five trips, and sponsors a child
with hemophilia from India.
Laurie Kelley, Usha Parthasarathy, Martha Hopewell

Usha Parthasarathy received our
Inspiration Award. Usha is a dear friend and also volunteer and expert advisor
on hemophilia in India since Save One Life’s formation in 2001. Usha helped
Save One Life to organize and launch its sponsorship program in India. In 2009
Usha joined Save One Life as India program coordinator, assisting with growing
and managing our largest country, with 25 program partners and more than 830
current and graduated beneficiaries. She works tirelessly in a completely
volunteer role. Usha lost both her father to an intracranial bleed and her baby
within two years. She left a career as a national newscaster in India to devote
her life to helping those with hemophilia, and became development vice
president for the Hemophilia Federation (India). Her second son, Sudharsan, born
in 1981, is now a post doctoral researcher in the hematology division of
Children’s Hospital of Philadelphia.

Not present, but honored, was board
member, friend and fellow-mountain climber Eric Hill, COO of Diplomat, who
sponsors 31 children, and has organized our mountain climbs to raise awareness
and money for Save One Life. His efforts have raised over $150,000 for save One
Life and Eric recently has made the first donation to our endowment fund.
Miahi of Romania

After dinner, we were entertained by
Mihai, a lovely young man with hemophilia from Romania. He and his mother flew
all that way to attend, as our guests. Handsome, slight of build and tall, he
was introduced by my long-time friend and mentor Adriana Henderson of North
Carolina (Romanian by birth) who has devoted her life to helping the poor and
suffering in Romania with hemophilia. She explained how Mihai excelled at
playing the piano, despite the limited resources of his family, and frequent
bleeds in his hands. Mihai played several beautiful classical pieces, and
ended with Chopin’s Nocturne Op. 9 No. 2, one of my favorites.

Best of all, Mihai’s sponsor, Reid Coleman of North Carolina, attended and was able to meet his beneficiary of many years!

The final presentation of the evening
belonged to Tony Fernández,
former shortstop for the Toronto Bluejays, and for one year, the New York
Yankees. Tony has been a long time friend to the
hemophilia community in the Dominican Republic. His Toronto Bluejays teammate
and best friend, Damaso García, has a son with hemophilia. When Damaso’s wife
Haydée De García Benoit, founder and president of Fundación
Apoyo Al Hemofílico (FAHEM), the DR’s national
hemophilia organization, asked Tony to attend their first camp in 1999, Tony
gladly said yes. The children were thrilled to have a national hero spend the
day playing baseball with them. He has since attended three camps, now called
Yo sí Puedo! (Yes I Can!) and one of the best hemophilia camps in the world!
FAHEM has since become a Save One Life
program partner.
Tony has had a distinguished Major
League Baseball career, starting in September 1983. He signed on to six teams,
setting a nine-year record for shortstops. He was awarded four consecutive Gold
Glove Awards, from 1986 to 1989, and was also named to five All-Star teams. Today
Tony is an ordained minister and founder of the Tony Fernández Foundation,
which works with underprivileged and troubled children by nurturing and developing
them through counseling, education, training, and physical and spiritual
Tony shared how Damaso Jr. felt
defeated early in life; his father was a star player, but he could not even
play baseball. Tony counseled him and encouraged him to find some other way to
participate other than actually playing. The encouragement took hold. Today
Damaso is a national sportscaster for the Dominican Republic and the entire
nation tunes in to him at 5 pm daily.

Tony reminded the audience that to give is to receive, and that the world needs
our help in these troubled times. He urged everyone to pick up the envelop in
front of them, and to give. His authority, his devotion to children, made an
impact. We raised over $4,500 right after his speech, with 19 more children
pledge for sponsorship.

Tony Fernández

The next day our team met at KYNE
offices, with David Kyne, president and founder, and Save One Life board
member, for a seven hour strategy meeting. The next 15 years will see tremendous
growth of Save One Life, and many more children reached, and lives changed.
we stay the course, the unthinkable might happen, yes, together we can bring
hope to the hopeless, just be faithful to the vision given to you by God and
He will find a way to bring it to pass.”
Tony Fernández, major league
ballplayer, minister, founder of The Tony Fernández Foundation
Thanks to Save One Life staff Martha Hopewell and Tricia Sico for organizing the event; and to our sponsors and donors, and all attendees. Please see for more information or to sponsor a child with a bleeding disorder in a developing country.


Kilimanjaro: Fire and Ice

The true result of endeavor, whether on a mountain or in any other context, may be found rather in its lasting effects than in the few moments during which a summit is trampled by mountain boots. The real measure is the success or failure of the climber to triumph, not over a lifeless mountain, but over himself: the true value of the enterprise lies in the example to others of human motive and human conduct.” —Sir John Hunt, leader of the 1953 British expedition that first ascended Mount Everest

Ready to roll! Kilimanjaro: the CEO Challenge 2016!

This was a week of triumph over self, as our group of nine attempted to summit Kilimanjaro, the largest free-standing mountain in the world and the rooftop of Africa. Kilimanjaro was born 300 million years ago in fire, when massive tectonic plates in Asia shifted, creating the Great Rift Valley and pushing up sections of the earth that eventually formed the volcano Kilimanjaro. If you climb Kili, like I did this past week, you will see miles of enormous lava rocks of black basalt littering the mountain, rocks that were birthed deep in the womb of planet Earth and blasted out when the volcano exploded. During the ice age, glaciers formed, adorning sections of Kili with massive frozen sculptures.

I thought of the similarities to hemophilia this week: bleeding into joints is the fire, the pain; ice, the pain reliever. And trying to improve hemophilia health care in developing countries? A grueling climb up a mountain is a good metaphor. For a successful climb you need self-discipline to get in shape, leadership, guides or a map, a compass, equipment, trust in your guide, and trust in your teammates.

Our team? An amazing group! Eric Hill, vice president and COO of Diplomat Specialty Infusion Group, and his 15-year-old son Andrew. Eric serves on our board of directors for Save One Life and sponsors 31 children. Eric climbed with me in 2011 with his son Alex. Rich Gaton, co-founder and president of BDI Pharma, a specialty distributor that provide hemophilia and other therapies. Rich’s company is a proud member of Save One Life’s Dedication Circle, sponsoring 20 beneficiaries over the past eight years. With Rich are his wife Wendy and two daughters, Taylor (20) and Samantha (16). Mike Adelman, vice president of commercial operations for Aptevo Therapeutics, Inc., manufacturers of the recombinant factor IX product Ixinity. And Jim Palmer, MD, a surgeon from Philadelphia and friend of Mike’s. Individually, we wished to triumph over self. Together, we climbed to raise over $65,000 for Save One Life.

Day 1: August 7, 2016 Sunday

We all gathered in the lobby of the Kibo Palace hotel in Arusha, Tanzania, excitement shocking us like static electricity each time we hugged one another good morning. Our guides, Hesbon, Kelvin, Victor and Edwin, helped us put our stuffed rucksacks on the bus. We clambered aboard and squeezed in among porters, guides and bags. It was a two-hour ride to the Machame Gate, where our adventure awaited.

First we stopped at the familiar store we stopped at five years ago, when Eric and I and another group summited Kili, to pick up snacks. We sat about in the sunshine on the grass, waiting for the guides to return. Hesbon went with me across the street to a shop to get a Nalgene bottle, for $7 which he fronted. I don’t think I ever even used the bottle in the end.

Finally, back on the road. We passed roadside shops and rural homes, dust swirling from our speed. When we reached the Machame Gate (elevation 5,718 feet), we felt pretty calm. Outside the gate, a mob of vendors hawking shirts and hiking supplies. Inside, the gate was swarming with hikers, porters, bags. It would be a very late 12 pm before we started our official hike. In the meantime, Hesbon filled out paperwork while we put on gaiters and filled our Camelbacks with water. We would carry a 25-lb daypack each day while our porters would carry our 50-lb rucksack, along with their own daypack and all the accouterments of camping for nine: mess tent, folding chairs, port-a-potty, our tents and mats, and food for 29 porters, four guides, a cook and nine hikers for six days!

Our first day then had us hiking about six hours to the Machame Camp, elevation 9,927 feet. The route was a groomed trail for the most part, through a dense and moist rain forest. It was cool and progressively dark. The forest was lovely, lush green, with trees covered in soft moss, making them resemble a young deer’s antlers, covered in velvet. Many birds serenaded me. One had a distinct sound: “Tweet… bong!”

Hitting the trail!

The hike was harder than the team expected and harder than I recalled from five years ago. Very steep, working our quads and calves intensely. At times we broke away from one another, then paired up with different teammates. Wendy took her time as she had asthma; husband Rich stayed by her side the entire day. The lead guide Hesbon also needed to stay with her as he always would be last to enter camp, to ensure his hikers were all present. Mike was stricken with food poisoning the night before. The hike was very difficult for him but incredibly he persisted and arrived at camp one. By 6 pm, the weather turned rainy and cold as we all stumbled at various times into camp. It was dark. Camp was crowded with people, so different than five years ago when there were perhaps three teams, spread out comfortably over the camp ground. Now there were maybe ten teams, with all their gear and porters and tents. Pandemonium in the dark, as we all shivered in the rain, waiting for our team to assemble and find one another! Our porters had our camp ready, and we finally found our tents and crawled inside.

I had a single tent; everyone else shared one. As I would each night, I laid out my sleeping bag, stuffing in my clothes for the next day to keep them warm when I awoke and placed necessary items for the night close by: Kleenex, water, cough drops. I was nursing a cold that would later strike my chest and make the hike difficult for me. One by one, we were being hit with physical challenges to the climb. Dinner was welcome, though we had to grope our way in the dark to the mess tent, careful not to trip on the tent stakes. Juju, a young man who doubled as a porter, would serve us each night. Each dinner usually started with steaming soup, rolls, followed by a main course– chicken, rice, beans, for example. Our team sat about the table, eating, joking and comparing experiences of the day. By 9 pm we went back to our tents, and crawled into our sleeping bags.

Day 2: August 8, 2016 Monday

Gaton girls at the Shira Cave Camp

I awoke at 4 am to the sounds of the porters preparing for the long day ahead. I had a pretty good night’s sleep though. My sleeping bag, rated for 0°, is toasty warm, making it hard to leave each morning as the temperature dropped more and more the higher we went. Each day started the same: Juju and Able brought us each tea or coffee first thing, to warm us up in our tent. This was a luxury, tea in “bed”! Then, they brought a plastic bowl filled with very hot water, to wash and brush our teeth in. You cannot imagine how important one little bowl of water becomes. Kilimanjaro is very dusty, and even by day two we were coated in dust. Washing was a luxury, and that little bowl of water became something I was excited to see each morning.

Breakfast on Kili

Then breakfast: usually a round of fried eggs, toast, jam, more tea or coffee, pancakes. Yes, they prepare all that fresh for us each morning! We top off the Camelbacks with water, toss in electrolyte pills, stuff in our rain gear (you can’t go anywhere on KIli with rain gear) and anything else needed for the day, pack our sleeping bags and clothes in the rucksack, and get ready to leave.

“Twende!” shouts the guide Kelvin, a big guy, at least 6 feet tall, who walks with a noticeable limp. Let’s go! We had our concerns about his limp, but also learn he was a national soccer player in his time. The leg injury forced him to retire, and he was able to still climb well, despite it. Mike is still not well, Wendy was much improved overnight, and the Gaton girls each have slight headaches, from the altitude. We are all taking Diamox, a hypertension drug that doubles as an altitude-sickness pill, but symptoms still appear in each of us from time to time.

Laurie Kelley and Mike Adelman hit the trail on Day 2

Today’s climb was through a completely different geological zone, the Moorlands. Gone were the towering green trees and milder temperatures of the rain forest. Starting our hike with a bang, we immediately ascend a rocky path that leaves us gasping. The entire day would be spent climbing on rocks and not a trail, much like my Mt. Washington training hikes. The air was cold, and we were encased in cloud cover all day. We would miss some stunning views of nearby volcanoes, as we could see little but the path ahead. As we ascended, we put some space in between us on the hillside; through the mist, seeing other climbing parties in their various colored rain gear, I thought we looked like brightly colored beads strung on a necklace draped on the grey neck of some ancient beast.

We passed the hardier vegetation in this cold climate: the Everlast plant with its pretty flowers, and the “antifreeze” plant, which closes each night to protect itself from the cold. The topography has changed radically.

We climbed from 8 am until 2 pm, reaching Shira Cave Camp, at 12,355 feet. By now everyone was feeling good, except Mike. But he never complained, and still kept plowing forward on this difficult hike. At 4 pm, Edwin, a cheerful 28-year-old guide, asked us if we wanted to do a 45-minute acclimatizing climb while dinner was prepared. Despite the large number of climbing parties, there was more space at this camp, and we spread out. Eric, Rich, Mike and I all did the acclimatization climb, which was not hard. I felt great at this altitude and relished the climb on the rocks, which were beautiful.

Jim Palmer, our team doctor and new friend!

Later in my tent, I wrote a bit about the day and felt the cold seeping in. Tomorrow will probably be freezing temperatures when we awake!

Eric Hill and son Andrew: my second time climbing Kili
with Eric!

Day 3: August 9, 2016 Tuesday

Our strong porters

I wondered when I woke up, why am I doing this? Sleeping in a bag on the ground, freezing cold, facing a long hike ahead. I could be home, clean and warm, having summer fun! That was the one and only time I thought this during the six days, caving in for a moment to a human desire to escape misery. Instead, I switched to thinking what fun this was, to challenge oneself, to share hardship with fellow teammates, to see who and what we all are deep inside. I dressed careful within my sleeping bag, then braced for the cold. Frost etched all the tents as we emerged like lethargic bears awakening from hibernation. The sky had cleared! Now we could see other volcanoes, including the summit cone of Kilimanjaro, Kibo Peak. That was our goal! Everyone was excited. Our goal! Kibo Summit on Kilimanjaro Still smiling!

Our goal! Kibo Summit on Kilimanjaro
Still smiling!
Lava Tower

By now I was coughing with a chest cold, complicated by all the dust and increasing cold air. Everyone else was well but coughing too. This would continue for days even after our climb. Breakfast was high energy and we could feel anxiety; we wanted to get going. Breakfast was hot but soupy porridge, toast and tea, and fried eggs. By 7:30 am we were on the trail, looking forward to a four hour hike through the Barranco Valley. This was a totally different kind of hike today, mostly flat with a few hills to navigate. Victor, our guide, took my camera and snapped dozens of photo of us as we climbed. We had on warm outerwear now, as the wind picked up. By noon we were at the Lava Tower, a massive rock formation jutting out of the ground, looking a lot like a mini version of Devil’s Tower in Wyoming. Perfect spot for lunch and we all joyfully sat at the table. By now our team had gelled beautifully with each person playing a role. Mike was our jokester, keeping everyone laughing with his witty remarks. Samantha was our musician, and she and Mike began thinking of songs we could sing to use pole pole, which means slow, slow in Swahili. It was hysterical listening to the many songs of the 60s and 70s that accommodated this but my favorite was set to Mony Mony.

Descending into Barranco Valley

After lunch we checked gear, loaded up our stuff, and headed out for one of my favorite parts of the climb: the descent into the Barranco Valley. Our plan was to ascend all morning, to 15,000 feet, which we did at Lava Tower, then descend and sleep at a lower elevation, so we can acclimatize better. Barranco Camp, our goal, was at 13,066 feet. Passing through a natural gate of volcanic rock, we descended into the valley carefully. The topography changed again, with rocks surrounding us on the hills, and strange trees appearing, designed to withstand the wind and cold. These giant senecios are actually cousins to the daisies! And they looked like truffula trees, whimsical creations of Dr. Seuss, which was appropriate as each black boulder we passed was coated with moss, that appeared as little yellow fu manchus. It looked comically like hundreds of black-faced Loraxes were watching us pass through the truffula tree forest!

Strange senecio trees

As beautiful as the descent was into the valley, the cold was seeping into our bones. Even Rich Gaton, who is so stoic and strong, confided he was freezing. My chest cold was painful and persistent now, and my nose was running chronically. When we arrived at camp, dotted about with colorful nylon tents, the weather was foggy, dreary, and cold—so cold. How would we do the summit if this bothered us? Andrew and I were shaking in our rain gear while heading for dinner at the mess tent. Our tents for sleeping that night were close together, so much that when Wendy or Rich so much as rolled over, I would know it! I felt badly as my coughing was going to bother my teammates. Wendy always seemed to have the right medicine for the right moment. She was our warm nurturer on the trip, despite struggling with asthma in the cold air this entire time.

Day 4: August 10, 2016 Wednesday

Summit Night!

We must embrace pain and burn it as fuel for our journey.—Miyazawa Kenji

Mike demonstrates how cold it is!

Today we would climb to 15,239 feet to Barafu Camp, the final camp before the summit assault. First we faced a 7-hour hike, including scaling an 800-foot rock wall right after breakfast, then a long hike to camp, braving cold but more detrimentally, dust. We were excited, though! We started our day with the usual hot tea in the tent, followed by my priceless little blue plastic bowl of hot water. By now we have given up any semblance of being clean. Dust is everywhere. Breakfast is a time to share, be social, joke, check in with one another. Everyone was doing well, with an occasional high-altitude headache that faded after ibuprofen doses.

We geared up, and began the climb. Again, one of my favorite parts of the trip! My quads are feeling fantastic after all the training I did this summer, hiking Mt. Washington and working with my trainer, Dan French. In fact, I would not use my trekking poles on the entire journey, except for the rapid descent after the summit. So here, I vaulted straight up the wall using my quads and balance. Everyone did well; everyone scaled it and enjoyed photos at the top, where a crystal blue sky greeted us. The view—spectacular. We could see down into the valley. Our camp was now just a colorful speck. Our team was smiling and happy!

Onward with no time to lose. We marched down the valley, on slippery, dusty trails that plummeted down at 45° angles at times, maybe even steeper. Our guides held our hands and prevented falls whenever possible. At the bottom, we crossed creeks, jumped rocks, and made it to a flatter surface, dusty with volcanic ash powder, and dotted only occasionally by the oddly placed massive boulder. It was a surreal, primitive, prehistoric landscape. Grey and black base, domed by a brilliant blue ceiling. We were feeling the effects of altitude, which slowed us a bit. Eventually we started to ascend again, up the trails, where flat slabs of shale chimed when we stepped on them, adding a touch of class to the barren landscape.

By the time we reached base camp, we were struggling with oxygen, sunburned and elated! This was it. What we came for. What we prepared all year for. The Moment! The entire camp was perched on a mountainside, and before us was the stunning, magnificent Kibo Peak, beckoning us to climb. We could clearly see its white glazed top, its rocky sides. Kili is a beauty of a mountain. I felt awed and honored to be standing before it. I made my way to my tent, ditched my backpack and gear and wandered about till all of our team made it to the camp. My coughing had gotten worse and my voice was hoarse and raspy. Hesbon offered antibiotics as a precaution. My lungs are my Achilles Heel, so I took them. They immediately gave me severe heartburn, so badly I was not able to eat much lunch. This was a bad sign as I would need my energy to summit.

But attitude and motivation go a long way, and I was pumped up! Our plan, explained Hesbon to the group, was to have a light dinner, then return to our sleeping bags to catch maybe a few hours of sleep. Then we would depart in two groups: the first was Eric Hill and son Andrew, who proved to be the mountaineers of the group. They could go faster than us and wanted to not have to stop for breaks (stopping for frequent breaks can refuel the climbers but can also allow the cold to settle in, and can actually demoralize the faster climbers who crave to keep moving). Their guide would be Kelvin, and they’d leave at 1 am Thursday morning. Our group was the second group, guided by Victor, including everyone else. We’d leave at midnight. Wendy opted not to summit, which was disappointing to all, but the right decision. She had struggled with asthma and dust the entire day, and it was quite frankly astonishing she was even at base camp. As sweet as she is, the woman has a core of steel!

I actually was able to get some sleep, though had to pass on dinner, as my stomach burned with the aftereffects of the antibiotics. At 10 pm, I awoke and started planning what to wear to the summit: layers. Incredibly, the weather was mild, at only 20°, with almost no wind. This was a stark contrast to five years ago when it was -5° with 50 mph gusts, freezing us, sapping us of strength, and cloaking any view with white out conditions. We couldn’t get off Kibo fast enough then. This time would be radically different.

We gathered in the mess tent and did a gear check. We were each assigned someone to carry our backpack and monitor us. Team Kilimanjaro does a great job of motivating climbers as well as monitoring their physical condition for signs or mountain sickness. Off we went!

The guides forced us to go pole pole. One step, then another, as slow as possible. They also created a rhythm, so important in keeping your pace and momentum. The night was clear and millions of stars burned overhead. It was a night created for a perfect summit! Step, swing, step, swing went our gait. Up, up the rocky path to the summit. I monitored the time and by 1:30 am we had our first break. Hydrating is key, though water tends to freeze in the Camelback tube. I looked upwards at the infinite sky and saw constellations: Orion the Hunter, Taurus, and then Cassiopeia, shaped like a W. The W was upside down, forming an M (for mountain?) over Kibo, and it guided me through the night. Twice I saw shooting stars, like fireworks celebrating our summit. I took the time to take out my iPod and started playing music to keep me going. Five years ago I lost track entirely of the night, and 7 hours merged into memories of only about an hour. Not this time: I played about three hours of Metallica and the Doors, and then Guns N’ Roses. At 5 am, I was actually dancing with the porters on the mountain, gyrating as they sang, then playing air guitar to Welcome to the Jungle….

Our goal
Clowning around at base camp: 15,000+ feet!

And then the iPod died. I knew from then on it would be a struggle. While hoping to summit at 7, our group was slow. This was good as no one got sick, but it depleted that much more energy. The guides forced Red Bull down us, which I detest but drank. It instantly gave us energy. Stinger waffle snacks, Gu gel, hot tea, anything to keep us energized. But the energy drained away. I bonked. I had been running on music and fumes and now my music was gone. It did a psychological number on me. Why didn’t I keep a second iPod in my other pocket! (Note to self for next time…)

I thought about the kids I know who struggle with hemophilia and poverty. This suffering was ordinary, a luxury, self-imposed. No big deal. Just put one foot in front of the other. The trouble was, my feet would not always respond to my commands! Victor took my arm and guided me, assuring I would not stop or sit. Sitting down was the kiss of death on the summit climb and was not permitted.

Mike was now doing great, finally over his food poisoning and feeling strong. Amazing! Jim was confidently plugging away, and never once seemed to fatigue. Rich Gaton and I climbed closely together, with his daughters. Without their mom there, I felt a deep need to stay close to the girls. They are strong, but I had done this climb before and knew the pitfalls. Self-doubt, giving in to fatigue, wanting to quit—been there, done that. Rich and I conversed, which was nice, as it kept our minds off the fatigue. Dawn broke behind us, a red orb peaking through the clouds below us. Funny, sunrise was happening below us! Above us, the summit.

Day 5: August 11, 2016 Summit Day!

Incredibly, we reached Stella point at the brilliant dawn of day, at 18, 848 feet. This was a milestone for sure, and you could see Uhuru Point, at 19,349 feet, the official summit, up ahead. It seemed so close and, in my mind, addled by lack of oxygen, I thought it was only a ten minute walk. I told this to Taylor, who was exhausted and ever so politely said, “I think I’ll stay here at Stella,” and sank to a rock. We cajoled her, and I told her just ten more minutes! Think of how you will feel if you stop now! Hesbon pulled her up and she stumbled on. I needed Victor too to guide me on. The ten minutes was actually another hour! Perhaps the hardest hour of the entire six days was getting from Stella to Uhuru, but we all did it.

We did it! At Uhuru Peak, the summit! Save One Life team

We hugged, we posed for photos with our Save One Life banner, and actually explained to some fellow summiters what the program was all about. I looked about at the view I couldn’t see five years ago when I first summited. There are no words: a massive volcano, with a deep caldera of lifeless moondust, shocked with gargantuan glaciers. The glaciers are blue tinted rectangular structures that you could compare to alien spaceships, or modern architectural skyscrapers or, as Taylor put it, like the rocket popsicles we ate as kids. I struggled to find a way to describe their icy beauty, like frozen fortresses on display for millions of years.

We needed to get down as oxygen is only 50% at the summit. We linked up one by one: Jim, Mike, Rich, Samantha, Taylor, me, our guides, and started the descent. Eric and Andrew were already on their way down. This would take over 5 hours and was another punishing trip. But for now, we gleefully focused on the goal we achieved and worked so hard for: the summit. Somewhere in my oxygen-deprived head, I was also thinking of what this could mean for Save One Life and the patients we serve. Money for programs; motivation to keep persevering despite setbacks and challenges; and perhaps, another summit climb, when more captains of industry like Rich, Eric and Mike join us to experience the outer limits of endurance, to raise money and awareness for hemophilia in developing countries, and to triumph, personally and professionally. When there is a common cause to help others who suffer, a purpose bigger than ourselves there seems to be no limits to what a group of compassionate people can accomplish.

Thanks to my teammates—you are strong, exceptional, compassionate and brave! In particular, thanks to Eric Hill for suggesting this climb and for his leadership, and to Dr. Jim Palmer for his advice, services and wonderful attitude! Thanks to Team Kilimanjaro for safely escorting us on this amazing journey. Thanks to everyone who contributed to our fundraiser, for you made this climb successful and worthwhile. Please visit Save One Life to learn more about how to sponsor a child with hemophilia in need, or to get involved. Get ready for the Kilimanjaro CEO Challenge… 2017?

WFH Congress: “Life chose this for us”

This week, for the first time in 26 years, the World Federation of Hemophilia is holding its biannual Congress on American soil. Gathered in Orlando, Florida are about 3,000 healthcare workers, patients and representatives from patient national organizations who want to learn from each other to advance care for bleeding disorders in their countries. Tonight was the opening ceremony, much toned down from years past. The focus was entirely on the 75% of the world’s 400,000 with hemophilia who have little or no access to care. What a huge change! The WFH–and the NHF, which held its annual meeting just last week–are together committing to help the world’s poor get access to the medication they need. This is the first time the NHF and WFH are holding meetings back to back, creating the largest gathering of bleeding disorder patients in history.

A crammed, enormous audience sat quietly listening to interviews with four speakers during the opening ceremony: Alain Weill, president of the WFH, and Jorge de la Riva, chair of NHF. Then, Alain Baumann, CEO of WFH and Val Bias, CEO of NHF. Jorge’s opening speech was passionate and focused on what he experienced when his son was born with hemophilia 21 years ago. “I am willing to fight for my son with my dying breath, for his health, his future, his life,” he revealed to the crowd. “Life chose this for us,” he remarked, but hemophilia would not dictate their life. Jorge acknowledged that his son is privileged to grow up with plentiful access to factor, but is cognizant of the underserved globally. He quoted Olympic skater Scott Hamilton, who also had a chronic disorder: You can succumb to it, adapt to it, or evolve and become better because of it. This latter is what we want to focus on in our community. Evolve. Jorge added, “It can be a gift, which can spur you to action, for something bigger than ourselves.”

At Save One Life booth: Martha Hopewell (executive director),
Agnes Kisakye (Uganda), and Usha Parasarathy (our India liaison)

That “bigger than ourselves” needs to be the developing world, where children suffer daily from untreated bleeds. The WFH showcased a film (produced by Patrick Lynch of Believe Limited) which portrayed a mother and a young man who grew up in Africa. Over and over the mother said, “I’m tired.” Tired of pain, of sleepless nights, of living day to day. It’s for them that we work so hard at the WFH, at Project SHARE, at Save One Life, to find ways to bring them care, to help them gain access to factor so they can live normal lives. I’m truly pleased to see that WFH is working now in tandem with NHF to bring care to other countries. And we at LA Kelley Communications will also work more closely with NHF, WFH and the Novo Nordisk Haemophilia Foundation to offer what we can. We’ve been assisting developing countries for 20 years, since 1996, and it’s amazing and gratifying to see all the groups coming together. For only together can we solve the problems of bringing factor and treatment to all.

We have four days of meetings, symposia and networking ahead of us. Then two weeks from today, I start my ascent up Mt. Kilimanjaro! Why? To fundraise for Save One Life, to bring attention to the plight of the poor in developing countries with hemophilia, to summit and unfurl our banner on the highest peak in Africa, and the highest freestanding mountain in the world. It’s a metaphor for our work in other countries: a long, hard climb with no amenities, but the view at the top makes it all worthwhile.

Fun scenes from close of NHF Conference last week:

Standing on the Shoulders of Giants

Dr. Olaf Walter reviews Octapharma’s history
was privileged this week to be invited to a special scientific symposium in
Heidelberg, Germany, sponsored by Octapharma. Octapharma is the largest
privately owned plasma manufacturer in the world. It recently launched  the first and only fourth generation recombinant factor VIII (FVIII)  produced in a human cell line without any chemical modification or protein fusion, NUWIQ®, now available in the
US. This unique product is important as it is hoped that a recombinant product
that originates from a human cell line might have low immunogenicity—in other
words, it might not trigger an inhibitor, which is the greatest complication of
was founded in 1983 by Wolfgang Marguerre; the name comes from the Greek
for the word “eight.” Octapharma manufactured the world’s first plasma-derived FVIII that employed a viral inactivation step using solvent-detergent. I cannot overestimate how important this process is. My own son used product
initially that had no SD or pasteurization and miraculously escaped HIV and
hepatitis C infection.
now serves patients in 105 countries with 6,200 employees in 32
countries, of which half are in the US, the largest market for hemophilia
Laurie Kelley with Marcia Boyle,
executive director of the IDF
Saturday symposium featured speakers from the US, Denmark, Canada, and Germany,
including our own Dr. Craig Kessler from Georgetown University. While all the speakers
were excellent, I learned a tremendous amount from Dr. Roger Kobayashi, of UCLA
School of Medicine, who is an immunologist. Patients with immune deficiency
share so many of the same concerns as those with hemophilia. Our need for
constant products, safe products, easy to administer and affordable. Dr.
Kobayashi reminded us that physicians like him, and companies like Octapharma, “stand on the shoulders of giants”–those researchers who have come before us. He told us that the very first Nobel Prize was awarded to a doctor who
discovered gamma globulins, proteins that can be used commercially to treat
infections in those with malfunctioning immune systems. He described the pain patients
felt years ago when intramuscular injection were given; the poor children! They
could not walk for days. Finally, intravenous infusions were manufactured and
successfully treated patients with immune deficiency. While he spoke, I had the honor
to be sitting next to Marcia Boyle, the executive director of the Immune Deficiency
Foundation, an exceptional leader who for 32 years has provided education,
advocacy and help to those with immune deficiency in the US. Indeed, Dr.
Kobayashi mentioned her three times in his speech!
learned about Alzheimer’s (discovered here in Germany), and Octapharma’s research into treating this
insidious disease, the fifth leading cause of the death in the US. There is
currently no treatment and after hearing Dr. Shawn Kile’s excellent presentation,
I pray that this company discovers a treatment soon. I recently witnessed the devastating
effects of this disease in a dear elderly friend. It strips a person of their
very identify and almost of their humanity. How long will we wait for a
treatment to slow it or stop its progression? Companies like Octapharma work
daily to answer this.
I was most interested in Dr. Craig Kessler’s speech on personalized
prophylaxis. Dr. Kessler described how half-lives differ dramatically among
patients and only a pharmacokinetic (PK) test can determine each person’s half-life. That’s the number one place to start with a proper treatment regimen. In
the “old” days, like when we were raising a child with hemophilia, we dosed
by weight and bleed severity only. Now we realize this is not enough. Each person
will have a different half-life. He displayed one slide that showed 66 patients
with half-lives varying up almost 5 hours. Once you know your half-life, you
can find the proper prophylaxis treatment. This might include looking through the vast
array of factor products. Dr. Kessler reminded us that patients want 1) reduced
number of infusions, 2) reduced inhibitor development and 3) to adopt prophy to
their own lifestyle.
Kessler reported that NUWIQ® is Octapharma’s new fourth generation recombinant FVIII from a human cell line—the
first such product. Because it is entirely from humans, and not animal cell
lines, this could potentially reduce the rate of inhibitor development and avoid possible
allergic reactions, and allow personalized prophylaxis with fewer
infusions.  He described several
clinical studies with NUWIQ®, including one with 135 previously treated patients,
none of whom developed an inhibitor. We also know that inhibitors can develop
in about 30% of previously untreated patients with factor VIII deficiency, usually
within 20 exposure days. Octapharma designed NUWIQ® to be less immunogenic by using a human cell line. I will want to follow clinical studies closely on the
product to see what else they uncover regarding this.
Laurie Kelley with Octapharma friends

was also interested to hear from Dr. Olaf Walter, senior vice president, and MC for the day, that Octapharma is conducting research for a  subcutaneous (under the skin) delivery of factor. I know of two other companies
that are also working on this, and it will again be interesting to watch
developments. As we write in our May issue of PEN, this is the most exciting
time in hemophilia!

The symposium
closed with a delicious lunch and then a black tie gala that evening at the
Heidelberg Castle. It was not only the 33rd anniversary of
Octapharma, but also the 75th birthday of founder and chairman Wolfgang
Marguerre. I have a special indebtedness to Wolfgang, as he is Save One Life’s
largest supporter and also sponsor the largest number of children, 120.

Laurie Kelley with Octapharma Founder and Chairman
and Save One Life’s leading donor Wolfgang Marguerre

The evening was
dazzling, with over 40,000 flowers, 500 guests including Octapharma employees from around the world, 150 wait staff, at least two high quality bands, delicious food and drink. This was a wonderful way to celebrate
the accomplishments of this company and its indefatigable and brilliant
founder. I met up with my hemophilia colleagues, including three of our
top sponsors for Save One Life: Wolfgang, and also Patrick Schmidt, CEO of FFF
Enterprises, Neil Herson, president of ASD Healthcare, and Paolo Marcucci of Kedrion S.p.A.

Together, all three sponsor
about 280 children with hemophilia in poverty annually. Many of the other
attendees also sponsor children, including hemo-mom and Octapharma employee
Sherri Rojhani, who just sponsored a child in honor of Wolfgang Marguerre’s

The evening
ended with spectacular fireworks, accompanied by songs representing many
countries, but the final song was a favorite of mine, the Irish pub-song The
Wild Rover.

When I thanked
Wolfgang for such a lovely evening, I told him he needed to manufacture a new
product—his energy! I want an infusion of whatever he has to keep me going strong
at 75 to do the humanitarian work I love to do. If only!
Thanks to Octapharma for a fascinating
symposium, such amazing festivities, and for all its support for Save One Life.

Uganda Part 2: “Meat is Christmas”

Uganda Visit:  Sunday April 24, 2016
More like 2.5 hours!

“I feel as though the cardboard box of my own
reality has been flattened and blown open. Now I can see the edge of the
world.” ― 
Tom Hiddleston, on an African UNICEF UK mission.

Today we would visit one family in Luweero, only a
two and a half hour drive north from Kampala. This time the
van came at 9:30, giving me a chance to sleep in. The sky was
cast in pewter, heavy and foreboding. Agnes and I again stopped at a roadside store to stock up
on groceries for the family. In the back of the van we still had gift bags brought from home for
the kids. We loaded up on rice, sugar, coffee, tea, lollipops… then I discovered a toy aisle!
Balls, dolls, puzzles, building blocks, crayons and paper: all very inexpensive, and I knew they would be a big hit. 
Agnes Kiskye,
executive secretary of HFU
Herding Ankole Watusi cattle

As we drove away, I absorbed the many sights of Uganda: red, rugged
roads; little boys herding enormous Ankole Watusi cattle—startlingly beautiful animals with
saber-like horns that generally steal all the attention at farm shows; a man
riding a bicycle carrying huge 2x4s sideways; a woman balancing baskets of
vegetables. There are not many cars as we leave the city; only bicycles, as most people get
about on foot.

The rains in Africa

The sky caved in, loud bullets of raindrops assaulting the roof in an ambush. During
the rainy season, the heavens gush water as if from a hose. We
could barely see the road ahead of us–but we could feel it. The pavement once again turned to dirt as we drove
deeper into the countryside. Mud splattered and huge puddles formed in the ruts
in the road. We jostled and bumped, watching the poor pedestrians get soaked.
As we drew close to the home of our next family, the countryside became
desperately rural. Green, lush and rich with minerals,
everything grows in Uganda: bananas, tea, and coffee. Most families engage in
subsistence farming, meaning they farm for themselves and sell whatever they
have left over.

Sseempa home in the rain

At last we find the little brick home of the
Ssempa family, blocks made from the local soil. By now their dirt front yard was
a pond. Whereas yesterday I told the driver to stay away from the house so I
could snap photos without the van in front, this time I asked him to pull up as close as possible. I was
wearing tan Etienne Aigner open-toed sandals, as old as the hills, but still!
Grabbing all our bags, umbrella, briefcase, we plunged our feet into the warm, rusty-colored
water and took two steps into the home, which we quickly saw had no floor. Just
dirt. It only had two rooms in the front, maybe two in the back. And in one of
the rooms was a motorbike, the driver sitting in the adjacent room, safe from the rain. A clothesline
full of laundry hung over the motorbike, and next to the bike, three blue plastic
chairs, where we were to sit. So we all crammed into this tiny, muddy, dusty
room: Agnes, me, the motorbike, the clothes, and nine children. Justine, the
mother, shuffled in, and nodded to us quietly. The children were smiling, as we
all laughed over the rain drenching us. Without room to maneuver, we
surrendered the food, and Justine slowly smiled. The children excitedly
took their lollipops; the ice was broken. We sat down on the chairs. Agnes tried
to help me keep my briefcase from resting on the floor, but we had no choice;
and my briefcase is made for rugged travel.

Agnes explained again the Save One Life
sponsorship program, why we were here and how we could help. Now we had to do
our interviews. Nine children: Rose, Florence, Isaac, Daniel, Simon, Annette,
and three with hemophilia—Kato, Vincent and Lawrence. 
Justine is only 30 but must care for nine children,
three with hemophilia, on $1.50 a month

Justine shares her family information with us:
her husband Peter is a lumberjack but must travel far with his employer to
where they can cut trees. He is not home much. He can be gone for up to 30 days
at a time, leaving her with the nine children and hemophilic bleeds to deal
with. And with that, there wasn’t much else to say. I noted the look on her
face: distant, furtive, stressed. She looked to be about 45, and I was stunned
when Agnes said softly, no. She is only 30.

The children with hemophilia still attend school,
which is good. The school is less than a mile away, and sometimes Justine must carry the children on her back when they have
bleeds. She tells us she fears for the children with hemophilia at school. “Caning”—corporal
punishment—is popular here and causes the children to have bleeds.

While she speaks, a weak and wet kitten hobbles
in, sores on its back, and sniffs at my feet. A scrawny chicken pokes his head
in the door then scuttles off. The children wait patiently for their turn to
speak. I feel something at the back of my neck; the oldest daughter, Rose, has leaned
over to touch my blond hair. Then she touches my forearm. They want to feel my
hair and skin, which feels and looks different from their own. I smile and give
her unspoken permission by my playful response, trying to “catch” her in the
act by grabbing her hand. She smiles back.

The home is rustic: there is no running
water, no plumbing, no electricity. They use candles at night. No place to keep
food. How does she feed nine children? I ask about meat: do they get beef,
chicken? Agnes just looked at me oddly. “Meat is Christmas,” she said. “It’s
too expensive; they may have it once a year.”

I learn that Kato, the youngest child with
hemophilia, had a twin brother who died at nine months from a suspected bleed. Kato is a
gem. He is responsive, curious, engaging, and always ready to smile. His two brothers are more studious
and quiet, and very shy. Interviewing them was difficult. But Kato couldn’t
wait to show us what he knew. He can write a bit in English! On the Save One Life new beneficiary form, he carefully wrote “Cow.” This was a
revelation. Together with his winning personality, there is surely hope for him
someday to rise above his origins.
Kato watches Agnes intensely
Kato can write in English!

Kato peers intensely into Agnes’s face as she is speaking to Justine, I glance about the home. No light can get in except through the splintered front door,
which is narrow. There are windows but they are boarded up with cloth and
cardboard. Malaria and yellow fever are rampant here, and so this must be some
attempt to protect them. The rain drums the steel roof, making it
hard to follow the conversation and translation.

pinpoint the same problem we have seen with the other families: they live too
far away for immediate treatment. It takes literally hours of rough travel to
get to Kampala for treatment. They can’t afford the transportation costs: motorbike
up to a main road, then public transport. And picture yourself on a 100-250cc motorbike
on these bumpy dirt roads with a bleed, then another two hours on a public bus
crammed with people. It’s pure torture.
They love new York!

The biggest shock of all was when we asked
Justine for her monthly income. $1.50. Surely we heard wrong and we ask again.
No, $1.50. She wants a little money so she can set up a small vegetable stand
and sell whatever vegetables she has left over. Or maybe participate in a craft
to sell goods. She wants to be more independent because she can’t rely on her
husband’s income.

Laurie Kelley and Agnes with Ssempa family, Uganda

When we finish the interview, the rain waned, and the sun was shining. Within minutes, the ground was drying, the water
receding, and we stepped outside for photos. Again I take out my New York City Chapter
t-shirts, the cleanest things around here, and the three hemophilic boys put
them on proudly. We have to leave, and promise to help. Even with the children smiling,
Justine cannot muster a smile. Her eyes gaze to somewhere else and she seems
without hope. Only little Kato carries the energy and dreams of the family. I
feel he is the one who will truly benefit from our attentions, so that he can
one day care for his mother as a man. 

As we return to our world, Kato’s smile would cheer me, and Justine’s face would haunt me for days to come.

Who wouldn’t love this guy?

 Visit for more information on sponsoring children with hemophilia, and to learn how you can help.
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