The Joy of Giving

“Fundraising is a systematic, coordinated effort inviting people to experience the joy of giving.” Aly Sterling

Last weekend, June 1, I was in New Orleans at the Hope for Hemophilia spring leadership weekend and gala, at the invitation of its president, Jonathan James, who has hemophilia. Hope for Hemophilia is a nonprofit that does in the US what we at Save One Life do overseas: provide direct financial aid for families with bleeding disorders who need assistance. While we have never worked together formally, I sometimes get requests for help here in the US: a plea for rent to be paid for the month, or a heating bill, car payment, co-pay. Even college tuition. I typically will forward the request to Hope first, or maybe HFA’s Helping Hands program, but if the person has already tapped out there, we will try to help them.

There is such joy in giving. Not so much like Christmas gifts or graduation gifts, but a gift that helps a person get ahead in life. A gift with no strings attached, often to a stranger.

Save One Life does this; Hope for Hemophilia does this. And this time, Hope did it to me. Gave me a gift, no strings attached.

Jonathan had not prepared me for the gala, though I had heard it was the most elegant event in hemophilia in the country. Black tie and gowns, everyone was dressed for a ball, and the theme was masquerade. Many people bought charming masquerade masks to cover just their faces, á la Phantom of the Opera.

Doug and I walked arm in arm up a huge flight of stairs to the ballroom, which had such a high ceiling, it felt like a canopy of stars at night. Each of the many tables had huge candelabras; everything was donned in purple, giving it a mysterious, Houdini feel. We sat with Jonathan’s parents, who were charming, and another family, who were founding members of Hope.

The gift Hope for Hemophilia gave to me that night was not just their Legacy Award, lovely in itself, but a beautiful video, narrated and sincere, which chronicled my story from the birth of my son, to my books, to my work overseas. I was stunned. No one had ever paid this type of tribute to me before. I don’t even have time to organize my own photos; how did they do this? How did they have the time, when they had an entire gala, with over one hundred guests, dancers, music, silent auction…

(See the video here)

It made me realize two things: 1) We truly honor whatever we spend time on. Hope for Hemophilia recognized the time and energy I’ve sent the past 30 years in the community, and I was honored with this amazing video. 2) Giving without any expectation of return. I’ve never donated to Hope for Hemophilia, as I have my own nonprofit to fund. And I give away funding to those in need directly. Jonathan James gave me an award and a video as a gift, pure and simple. And it was so profound. I was very humbled by this gesture.

In my acceptance speech, I touched upon this theme. We are put on this earth, I believe, to give without expectation of return on investment. We give because it’s the right thing to do. Because another human being is in need. And what we get in return whether it is immediate or somewhere down the road, or maybe even in the next life, is worth so much more than the gift!

That very week, on Tuesday, a handsome, fit young man of 20 showed up in the Save One Life office. Owen is from Kenya and he wanted to meet Save One Life, since we operate in Kenya. In speaking with him, I found out he also wanted to thank me; 18 years before, he was a two-year-old, in the public hospital, bleeding. There was no factor in Kenya. His doctor, who I know, made a request to us, and we shipped the factor . He was infused, healed and was sent home. Now he is in my home state, studying to be a physical therapist so he can one day work with hemophilia patients.

He came to thank me; I was the one who had sent him that factor, 18 years ago. Amazing!

And his gift to me? He will join our board of directors to represent Africa.

Thanks to Jonathan James, Porter Snow and everyone at Hope for Hemophilia for their generous programs, their sincerity in wanting to make the world a better place, and their goodwill and positivity. Thank you for an amazing weekend. I’m pleased to know we share the same values and outlook, and desire to help, and I would love to work with them in the future.

Please be sure to give, without expectations, and experience the pure joy of it!

See the video here.

Honoring a Little Boy and a Great Man

Last week, I traveled to California, for an exclusive showing of the wonderful movie “Bombardier Blood” to employees of NuFactor, the hemophilia distribution program of FFF Enterprises. We gathered at the Omni Resort in Carlsbad, where Chris Bombardier and I marveled at the brilliant blue skies, warm sunshine and swaying palm trees. The movie was warmly received; there was a standing O before it even ended, in honor of Chris’s achievements! But the best moment for me was being able to tell employees the gratitude I have for their founder and CEO, Patrick M. Schmidt.

Laurie Kelley and
Patrick M. Schmidt

Patrick and I have a long history, meeting on August 12,1995, when he was attending a business meeting in Boston. He called me the previous week, out of the blue—I had no idea who he was. He said he had heard of me, saw my books, admired my work and independent stance (I was not part of an HTC, specialty pharmacy, manufacturer or nonprofit. Back then, you were one of these). He was just entering the hemophilia community, and wanted to pick my brain. So we met over a cup of “chowda” in downtown Boston. I found Patrick sincere, eager to get involved, and respectful. And he remains so to this day.

During lunch, he asked me a question that reverberates today: What can I do to make a difference?

It happened that I was still reeling from the murder the previous summer of a beautiful little 5-year-old boy. On a hot summer day in August 1994, I was leaning against my kitchen counter and opened the Boston Globe. The headlines screamed that a little boy from Easthampton, Massachusetts had been murdered. According to his stepmother, some strangers entered the house a few days before, on a quiet Saturday, smothered the child with a pillow, hit the stepmother in the head, and left the baby in the crib unharmed. Nothing was taken. There were no footprints, fingerprints and no one saw anything.

The greatest shock was that I knew this child. He had hemophilia. His grandmother, Jennie Gosselin, had been sending me photos and stories to publish in a children’s newsletter I once had, called “Factor Fun.” The headlines dominated for the week, until the stepmother was arrested for premeditated murder. She remains in prison to this day, and will be for life. The reason she killed this child? His medical bills were too expensive, and she wanted another child but couldn’t afford one.

This touched Patrick deeply. That a child would be murdered because his medical bills were too expensive was abhorrent. Also, Eric was the same age as his daughter, Natalie. I can see even now the look of horror and dismay on his face as he considered all this. Did he want to make a difference? I suggested a scholarship in Eric’s name, so that he would not be forgotten. Patrick immediately approved. The scholarship is now in its 23rd year! It has helped hundreds of students attend college.

Eric Dostie with grandpa George

I remained friends with Eric’s grandmother right up until she passed away two years ago. Before she moved to North Carolina, I would visit her in Easthampton and we would stop by Eric’s grave. She was forever grateful to a man she never met for his act of compassion and generosity.

If you are a US student with a bleeding disorder in your family, you can apply for the Eric Dostie Memorial Scholarship. This year’s application is closed, but mark it on your calendar for the fall, when you can apply again. And check out our scholarship page on our website, which lists even more you can apply to.

Many thanks to Patrick M. Schmidt for his friendship, mentorship and support. The movie “Bombardier Blood” showcases Chris’s climbs, but also the work we do at Save One Life. Patrick, by the way, is our number one sponsor, supporting 180 children who live in poverty. And he is our top donor. He believes in giving children a chance in life.

He has changed so many lives around the world… including mine.

Our Christmas Carol 2018

Jose Pepito of the Philippines

Merry Christmas! Happy Hanukkah! Happy Kwanzaa and to all, Happy Holidays!

In holidays past, we used to send out Christmas cards to everyone. We loved doing that and we love receiving them. As we have grown, and have expanded our humanitarian programs more internationally, we are seeing so many desperate needs. We decided instead to send a holiday e-card, with a story of someone in need we have helped. Instead of the usual $1,000 on cards, we are channeling this money and more into urgent needs at the holidays. We hope you understand and approve. We’re calling it our Christmas Carol! As you know, in Dickens’ A Christmas Carol, Scrooge by the end was doling out his money to help those in great need, especially Tiny Tim, who had a chronic disorder. And he discovered love and joy in the process.

 

Our “Christmas Carol” this year was helping Jose Pepito of the Philippines. Jose Pepito is 48, has hemophilia and inhibitors, five young children, and is single; his wife abandoned the family five years ago. His heartbreaking story is right from a Dickens novel.

He was orphaned early; his mother died while giving birth to him. His father died when he was nine.  After his siblings abused him, he 

left home at 16 and lived on the streets. He learned to drive a tricycle (called a tuktuk) at age 19, and used it to transport people. His ankles and knees took a beating and he endured many bleeds. He also survived an appendectomy, gallstone operation and a head injury! 

He now lives in a slum, as a squatter. It’s known as a drug haven, making it difficult to visit him. But Andrea Trinidad-Echavez, a woman with VWD and founder of Hemophilia Advocates-Philippines (HAP), dared to visit him, to photograph his conditions, and ask for help from us.

Jose Pepito suffered a psoas bleed—horribly painful—and pseudotumors. In November, the family’s tricycle – their main source of income – was taken by lenders after their father failed to pay monthly amortizations. Most importantly he needed an operation, which required the expensive and rare inhibitor drugs. HAP reached out to us, and we provided over $200,000 worth of medicine for his operation, thanks to inhibitor medicine donations from you all!

Andrea asked Jose Pepito what would be a good livelihood, since he is unable to use a tricycle now? He said a small store, as he lives in a colony. He can have a decent store with $1,000. “We will be providing his family with weekly grocery in the meantime,” Andrea said. “Right now, the kids are begging from their neighbors, just for them to eat!”

 We forwarded the $1,000 for food and necessities. And we will get him a grant from Save One Life for a store. Merry Christmas, happy holidays and God bless us all!

You can help someone like Jose Pepito too!     www.saveonelife.net 

 

“And how did little Tim behave?” asked Mrs. Cratchit, when she had rallied Bob on his credulity and Bob had hugged his daughter to his heart’s content.

“As good as gold,” said Bob, “and better. Somehow he gets thoughtful, sitting by himself so much, and thinks the strangest things you ever heard. He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see.” 
― Charles Dickens, A Christmas Carol

 

 

 

Bombardier Blood: Incredible Journey with a Cast of Characters

Coincidences are God’s way of staying anonymous. Albert Einstein 

Yesterday I was in Denver, Colorado, to attend the hometown premiere of Bombardier Blood, the new documentary that chronicles the life and achievement of Chris Bombardier, a person with hemophilia B this year who became the first person with hemophilia to complete the Seven Summits. The movie was debuted at NHF’s annual meeting in Orlando, in October, to an audience of over 500.  Yesterday, the Colorado Hemophilia Society rented an IMAX theater, and invited the Colorado bleeding disorder community to attend.

Chris and Jess Bombardier with Laurie Kelley and Amy Board Photo: Rob Bradford

What a proud day for Colorado! Chris and his wife Jess attended, flying in as I did from Boston, which recently became their new home. Chris’s whole family came: parents Alan and Cathy, Aunt Bev and Uncle Jay Labe and cousin Nicole, and of course, “Crazy” Uncle Dave. And while Chris’s whole family is incredibly warm, down-to-earth and personable, I really wanted to meet this character Uncle Dave! When you see the movie—and you will someday—you will know what I mean!

Chris’s poster is right next to Bumblebee’s and Aquaman’s!

We congratulated the astounding film-making and editing team of Rob Bradford and Steven Sander, who were both present, and thanked expedition and film sponsor Octapharma. The theater filled with community members—moms, dads, small children, and many of Chris’s peers with hemophilia—holding popcorn, soda and high expectations. We settled into our seats before the mammoth screen, hushed our voices, silenced our cell phones, and the theater darkened. The darkness faded into a scene of Everest, prayer flags, snow and ice, and Chris, trying to skewer a vein in the icy air. The film continued from this moment at Everest, into a 90-minute tale of what it took to get him there. It is a fascinating story of a boy with hemophilia who dreamed of being a baseball player, who was thwarted in his dreams, who suffered depression, anger, who was disconnected from his own local community… until key events unfolded in sequence, “like divine intervention,” one audience member confided. The events included the right people appearing in his life at the right time, until his destiny seemed all but spelled out. This young man would conquer Everest.

Chris’s proud parents, Cathy and Alan

I took part in Chris’s journey at some point, and have seen this movie three times now. It never fails to inspire. You want to jump out of your seat and get moving, to find your own dream, and then make it happen. If Chris could climb the Seven Summits (a feat only about 450 humans ever in history have done!), and did it with hemophilia, then what can the rest of us accomplish? We are only limited, it seems, by our own imagination, and our belief in ourselves.

The audience loves it! Photo: Rob Bradford

But some new footage was added to this version of the film—the role played by the vivacious and energetic Amy Board, executive director of the Colorado Hemophilia Society. Amy was the person who drew Chris out from the crowd. She encouraged him to come to hemophilia camp, where Chris met someone else with hemophilia for the first time. He saw how the children were active, happy, connected. And Chris became connected. He volunteered at camp, became a mentor to the children. Due to Amy, Chris became part of the hemophilia community. It was the first major step on the long hike to better mental health, a career, a new vision… and ultimately Everest.

Laurie Kelley meets Crazy Uncle Dave!

Chris did not just scale the Seven Summits or make a movie about himself; he has promoted hemophilia worldwide with his life-risking achievement, and he has made a call for action for others, to help those in developing countries through Save One Life. Without Amy, without camp, he might not have joined the community. Without working at the Indiana HTC as a lab tech, he might never have gone to Africa, where his eyes were opened to the suffering of his blood brothers overseas. Without Uncle Dave? Who knows. Bombardier Blood boasts a cast of supporting characters who embody this mystical truth: We never know what ripples we create when we reach out, take a risk, and care about another human being.

Chris did it. He made history. First person with hemophilia to scale Everest, and to bag the Seven Summits. And I suspect that Chris’s story is far from over, but is really just beginning.

Chris with photographer Rob Bradford

Laurie with Octapharma reps Paul Wilk and Elizabeth Pulley

Laurie Kelley with photographer Rob Bradford and film editor Steven Sander

         

 

 

 

 

 

Thank you, Barry!

On Friday I went for a 32-mile bike ride, on my usual route that winds through back roads of the north shore of Massachusetts, out to Plum Island to the ocean. It’s a ride I did with Barry Haarde twice, and I thought of how he pushed me into cycling longer than my usual 12 miles, and faster than my usual 13 mph. I actually clocked myself at 15.7 mph. Not bad for age 60.

Last Sunday, August 12, we gathered on a different beach, Odiorne Point in New Hampshire, to remember Barry and his amazing contributions to our community and in particular to the nonprofit I founded, Save One Life. About 50 people from all over the country: California, Connecticut, Denver, Texas, Washington DC and Barry’s family from Florida, trooped in with bicycles to recreate the last 10 miles of his first cross-country journey.

Martha Hopewell, executive director of Save One Life, gave a deeply stirring speech that highlighted Barry’s achievements and impact:

“It was just seven years ago, on this very same day, we celebrated Barry’s first ride across the US at Laurie’s house. We toasted his 3,667 miles and had no clue, at that time, that he would ride 16,728 more or, for that matter, raise over $250,000 for Save One Life!

“Barry’s accomplishment comes after much physical hardship. Barry contracted HIV in the 1980s from contaminated blood products used to treat his severe hemophilia. He also contracted hepatitis C, which required four years of grueling interferon treatments, during which he almost lost his life.” Barry didn’t publicly reveal his HIV status until 2008. “Once Barry made that courageous choice, however, he has been an increasingly vocal advocate for the hemophilia and HIV communities ever since.”

Martha Hopewell, Director of Save One Life

“When Barry undertook his first tour in 2012, he rode for 50 days through ten states and Canada. In addition to raising funds to help needy children, you all know that each day he rode in memory of family and friends lost to AIDS. When Barry finally dipped his wheel in the Atlantic after his first comment was, “Let’s do it again next year!” “And so he did, with the team at Save One Life, his employers at Hewlett Packard and many supporters encouraging him as he overcame physical and psychological barriers to make history. Barry’s goal was to ride through every state. He didn’t quite make it, but his Wheels for the World rides got him to 37 of them…not bad at all!” “We celebrate Barry today. We will forever cherish his enthusiasm for riding and his passion for his blood brothers and sisters around the world. He is here with us at this very special memorial. God bless Barry, and all those in whose hearts you will always live.”

We lost Barry in February. Not everyone knows this, but he took his own life. Despite his beloved status in our community, his fame, with years still ahead of him, he could not outride the darkness that dogged him. Teddy Roosevelt, one of our most accomplished of presidents, and an athlete in his own right, suffered from depression, and wrote, “Black care rarely sits behind a rider whose pace is fast enough.” Barry once told me, “Endurance athletes like me aren’t always heading towards a goal; we’re often running away from something.”

As I rode back from Plum Island on Friday, I could vividly see in my mind Barry ahead of me, his lanky figure balanced on his carbon-framed steed, his left hand shooting our and pointing downward each time we neared a pothole or a crack in the asphalt. His way of warning me of danger ahead. I thought, maybe his legacy is not so much how much money he raised, but of the need to be aware of our community’s potholes and cracks—the mental health issues, particularly depression, that lurk insidiously in our community. I hope addressing these becomes Barry’s true legacy.

Read the press release about the even August 12. Link here https://www.prweb.com/releases/cyclist_barry_haarde_honored_for_his_legacy/prweb15699984.htm

Thanks to our co-host, New England Hemophilia Association, to board members Ujjwal Bhattarai and family, Myrish Antonio and husband Jojo, Chris Bombardier and wife Jessica for attending, to our staff at Save One Life (Martha, Jodi Kristy), to all of Barry’s dear friends who attended, and to Shire and Aptevo Therapeutics, The Alliance Pharmacy and George King Bio-Medical for making this event possible. 

Martha also added thanks to the corporations that sponsored Barry’s rides over the years. The biggest sponsor was Baxter/Baxalta, which contributed almost 40% of Barry’s total with $100,000.  The Alliance Pharmacy distinguished itself as being the only company to support all six of Barry’s rides for a total of $30k.  Biogen/Bioverativ, Bayer Healthcare, George King Bio-Medical, Amerisource Bergen, Matrix Health Group, Aptevo Therapeutics, American Homecare Federation, Emergent Biosolutions and Optum Rx also contributed to this success.

 

Wheels for the World was championed by the Lone Star Chapter of Barry’s home state of Texas, Hemophilia of Indiana, NEHA and Sangre de Oro. The Colburn Keenan Foundation also gave in 2014.

 Most special to Barry were the nearly 250 individuals who gave to his effort. Priscilla Oren was the first donor of every ride! She is joined by Kevin Anderson and Lisa Schober who devotedly donated to all six rides.