Save One Life

Our Heritage, and a Great Mother’s Day Gift

Laurie Kelley May 9, 2011


I had a lovely Mother’s Day with my three children, who accompanied me to Springfield to see my mom. After lunch, we went to the cemetery to see the grave of my Irish grandmother, who is our matriarch. There, my mother gave my three children a little family genealogy (which doesn’t include hemophilia, as apparently, we are the first!). I’m fourth generation Irish, and we have a huge clan in Massachusetts. I heard some stories I had never heard before; got to see the grave of my great-grandfather, Martin Hogan, which I never had seen before! And my children learned that I had two sisters who didn’t survive, and we visited their grave too. I took photos of the grave sites. It reminds me of how important it is to know where we came from.

In hemophilia, we are trying to do this with the movie Bad Blood, which is now being shown around the country, and with Barry Haarde’s Hemophilia Archives. Please check them out. And you can also read many books on the subject of our community’s past, starting with Blood, by Douglas Starr.

We can keep heritage alive in many ways, and one is in telling stories. I received a wonderful Mother’s day gift in the form of a story published in the Boston Globe today. Please read it (link below) to learn about our humanitarian work for children in developing countries. In it, you’ll read that on Thursday we celebrate our 10th year Anniversary for Save One Life, our nonprofit that helps children with hemophilia in poverty. We’ll be honoring my mom–who so generously is donating half our family’s inheritance to Save One Life in the form of land in Massachusetts–all we have ever owned of value–to start an endowment in my grandmother’s name: The Florence Ashe Hogan Memorial Endowment.

A wonderful way to help others and keep our heritage and family alive, through the strong mothers who founded them.

http://www.boston.com/lifestyle/health/articles/2011/05/08/faced_with_an_ill_child_and_little_information_she_chose_to_fill_the_void/?camp=misc%3Aon%3Ashare%3Aarticle

Book I Just Read
History of a Suicide: My Sister’s Unfinished Life
Jill Bialosky

I bought this book on my Kindle after reading a glowing review in a magazine, which praised the writing as well as the handling of the topic. Not the kind of book I normally read. In a nutshell, the author’s sister, Kim, takes her life at 20, following a life of paternal abandonment, at times absentee and mostly depressed mom, dropping out of school, abortion, cocaine, romantic loss and no spiritual anchors.

Bialosky delves deeply into reasons why, and examines her own relationship with her beloved sister, and her feelings of loss, guilt and shame. The book is at its best when it simply focuses on the real story—Kim. It wanders and loses focus when Bialosky tries so hard as an author to summon literary comparisons and strength from the classics: Melville, Shakespeare, Greek tragedies, and so on. She even reprints her own poetry on her sister from an early age. Sometimes it seems Bialosky is trying too hard to be a sophisticated writer by conjuring up psychological archetypes, when she should just tell the story from her heart and not her head. She’s trying to be a Thomas More (“Care of the Soul”) without the credentials.

But she does have credentials in heartache and the book conveys these. The book is less an insight into suicide itself, despite the statistics and reports offered to substantiate the book, than the personal story of Bialosky’s sister, who was in a downward spiral from an early age. I stopped reading after two-thirds of the way through, a thing I rarely do with any book, because I felt I was reading the same thing over and over and was not learning anything new. The book rambles, is a bit uneven, loses new insight, and tries awfully hard to be highbrow. But Kim’s story is deeply compelling. Two stars.

World Hemophilia Day

Laurie Kelley April 18, 2011


Today is World Hemophilia Day, celebrated all over the world where there are established hemophilia organizations. There will be some excellent photos and public awareness campaigns, which will hopefully help these organizations get recognized from their governments.

It’s also a time for companies to make grants of money and factor as gestures of solidarity, which is great for established organizations.

There are an estimated 400,000 with hemophilia in the world. Up to 75% of them have little or no treatment. Many of them are even in countries where there are hemophilia organizations. But here is an interesting thing: If we could observe the earth from a far, and light up the countries where there are no hemophilia organizations, you’d be amazed to see that most of them are in sub-Sahara Africa and the Caribbean. This means no patient registry, no education and no factor.

It will be a glorious World Hemophilia Day some day in the future when we are able to bring so many other countries into our global community and share our success, our resources and our compassion with them. For now, we can be glad for those we have helped and who are celebrating.

To learn more, visit www.wfh.org and www.saveonelife.net.


Great Book I Just Read
The Screwtape Letters by C.S. Lewis

I thought to reread this 1942 book from high school days today on Palm Sunday. What a joy! This small book is packed with thought-provoking commentary on religion, good and evil, Christianity, and being a human, amusingly packaged as a series of letters from a senior devil to his disciple. Lewis was one of the foremost authors on Christianity of his day, and is widely known for the Chronicles of Narnia series. But this book is truly one of his masterpieces. Easily read in a few hours, it will haunt you for years. Screwtape writes to his nephew, “dear” Wormwood, guiding him as the minion attempts to seduce a human to the dark side and away from Christianity. It is at once deep, amusing, satirical, insightful and embarrassing—you may see yourself at times in the hapless and struggling human. Far from the silly horror-movie antics Hollywood uses to portray devils, Lewis skillfully points out that devils can merely distract us from “the Enemy” God to win humans over to their side. There are many excellent thoughts and phrases, worth debating and pondering. What would Lewis write today with all our texting, computers, Netflix and video games? Four stars.

Jambo Kilimanjaro!

Laurie Kelley March 21, 2011

At 19,340 feet, Kilimanjaro is the highest mountain on the African continent and the largest freestanding mountain in the world. And guess what? I am going there in August! I’m actually going to hike it and attempt the summit. Why? Not just because it’s there, but as a fundraiser for Save One Life.

Save One Life is a child sponsorship program for children with blood disorders in developing countries. I founded this 10 years ago to help the poor I saw during my trips overseas. We now have 750 children and adults with hemophilia enrolled, and we hope to add many more! Remember, of the estimated 400,000 with hemophilia in the world, 75% have little or no access to factor. They need our help. And we have a way to help them.

The climb is the brainchild of Eric Hill, president of BioRx, a homecare company, and a sponsor of two kids with hemophilia. Last year he, an employee, and a person with hemophilia, Jeff Salantai, climbed Mt. Rainier. That was a highly technical climb, meaning they had equipment, ropes and crampons. Thankfully, Kilimanjaro is not a technical climb, but it’s no walk in the park! With a team of ten, we will trek for 4 days, hopefully summit on the 5th, and then come all the way downhill in one long day.

Would you like to help us?

Visit http://www.saveonelife.net/mt-kilimanjaro-climb.php

See who is climbing with me! And consider making a donation. Note that climbers underwrite their own travel expenses: so 100% of your contribution will go toward Save One Life’s core services and Africa programs. Please be sure to email us to let us know who you are sponsoring!

Asante Sana (thank you)!

Jungle Photos (www.junglephotos.com)

Great Book I Just Read

Home of the Blizzard by Douglas Mawson

In December of 1911, Douglas Mawson, an Australian geologist, set out Antarctica to explore a 2000 mile long coastline to gather scientific data and search for the magnetic pole. What happened is one of the greatest survival stories of all times. When one companion falls to his death in a crevice, and takes most of the supplies with him on his sledge, Mawson and his remaining companion struggle on. They only had six dogs and one sled with enough food for ten days. Their struggle to survive is surreal; the dogs are reduced to eating the leather straps on the sledges, or even the hair from the reindeer sleeping bags. One by one, the men eat the dogs to survive. And it’s this that led to the demise of Mertz, who becomes delirious and dies. Vitamin A poisoning from dog liver is suspected, but not in this book, as there was no word even for vitamin then!

Alone, Mawson heroically staggers back in blinding katabolic winds, and temperatures of 40 below. How he survived is beyond belief and makes for a gripping read. Mawson is a professor and geologist, and the book is old, so expect some stilted writing and highly technical explanations. But Mawson is one of exploration’s greats and this is a classic. Four stars.

Superheroes Unite!

Laurie Kelley January 31, 2011



I just spent an exciting two days in Phoenix, Arizona at the National Organization Camping Conference for Hemophilia Organizations, more “tastefully” known as NACCHO. Now in its 10th year, this was nonetheless the first time I’ve been free to attend as a speaker. It’s a great program that teaches best practices and principles of camping for kids with hemophilia, generates a tremendous amount of motivation and allows attendees to interact and learn from one another. (Photo: Cindy Komar, and board planners)

I arrived late due to yet another snowstorm in New England, and it was clear the attendees already were bonded and excited. Led by “Big Dog” Pat Torrey, the theme of the entire meeting seemed to be “Superheroes.” Using this metaphor, camp directors were encouraged to think like a superhero: what skills did they have? How would they help and serve others? Big Dog found creative ways to keep bringing each session to a close around this theme. He encouraged people to get into their role by dressing as superheroes! This led to some hilarious improvising, as most attendees used whatever materials they could find at the event or at the hotel.

I was impressed to see camp representatives from Mexico, the Netherlands, the Czech Republic, Romania, England and India! NACCHO invites professional camping organizations to come in and share ideas and techniques applied to camps nationwide, and then find ways to make them applicable to a camp for children with bleeding disorders.

I was invited to speak about Project SHARE (our factor donation program) and Save One Life (our child sponsorship program). How does this relate to camping? Some developing countries have camps—indeed, I help to found a camp in the Dominican Republic, and have helped with camps in Romania. I also helped fund and run a camp in Zimbabwe, sadly their first and so far last one. Often things discussed at NACCHO are not applicable to camps in developing countries. When one speaker insisted that parents demand clean facilities, and showed a photo of a run-down lavatory, I thought, “That looks pretty good to me!” while the audience winced. When safety rates high here, overseas it’s simply a focus on factor being available. Different standards based on different realities.

The things that are the same? All kids want to meet other kids with hemophilia. All kids want to have fun. They need medical staff nearby in case of emergencies. All kids love to pretend, and the idea of a superhero is universal, whether it is a Marvel comics guy in a red suit, or a Norse god.

Most important: you cannot have a camp without factor, and most developing counties have no factor. Camp becomes a way to attract attention for factor donations and funding; it’s also a great concrete way for a nascent hemophilia organization, struggling to find a way, to provide a program and learn how to organize, delegate, and fund raise. Save One Life also dovetails with this program, as many of the kids who come to camp can be interviewed in depth, and can apply for financial aid through Save One Life. Through Save One Life, we’ve been able to have more children attend camps, or vice versa, join our program. Either way, they benefit immensely!

I’m afraid some of my searing images poked a hole in the bubble of elation surrounding the conference, but this is reality for thousands of children. We sometimes forget how lucky we are in America. People were touched more than shocked: following the presentation we raised enough money to sponsor two children! NACCHO planners decided one from India and one from Romania, and hopefully, this would be a perpetual gift that will come from each future NACCHO conference.

The conference celebrated Saturday night at an indoor racetrack where the attendees got to act like kids! Most went in “drag,” in their superhero costumes and there were prizes for best costume, as well as best camping ideas. I dressed as a cowgirl, and as I hung out with Usha, Save One Life’s program liaison from India, I told everyone that I was the cowboy and she the Indian.

If your chapter has a camp and you think you’d like to expand on your activities, programs and vision, NACCHO is the place to come.

Thanks to Bob Graham for the invitation to NACCHO, and to Cindy Komar, executive director of the Hemophilia Association, Arizona, and to Pfizer for providing all the funding for this great event!

Book I Just Read
Kissing Kilimanjaro by Daniel Dorr
This easy-to-read book details Dorr’s personal attempt to summit Kilimanjaro. It’s a nice read, done in one evening, as nothing is too technical or even historical. It’s interesting to see Tanzania through Dorr’s eyes, as he is a naïve newcomer: new to Africa and poverty. His girlfriend comes with him on his adventure. Failing the first attempt, he is haunted by his own inability to conquer altitude sickness despite being in good shape, and sets out to try once more. A good book to read for mountaineers or wannabes. Dorr is not a great writer; the text is like reading someone’s blog, casual with easy words and short sentences, but likeable. For those planning to attempt Kilimanjaro—like ME—it’s a good resource. Two stars.

Charitable Thoughts

Laurie Kelley January 3, 2011


It’s a new year, and a time of resolutions. How about a resolution to be more charitable? So many I know think of donating time and not money, when for most organizations, nonprofits and the people they serve, money helps the most.

This story sure caught my eye:

In July, Violet and Allen Large of Lower Truro, Nova Scotia, won more than $11 million in a lottery. They have since spent every last penny—none on themselves. “What you’ve never had, you never miss,” said Violet, 78. The couple donated the money to a list of causes that included the local fire department, hospitals, and organizations that fight cancer, Alzheimer’s, and diabetes. Violet has been undergoing cancer treatments, which has underscored for the couple the limits of wealth. “The money that we won was nothing,” said Allen, 75. “We have each other.” The Week

There are so many causes in hemophilia worthy of a donation: your local chapter, a family in need (yes, we do have many families with hemophilia suffering here in the US). Make a donation in memory of a loved one or in honor of someone you admire to the World Federation of Hemophilia or the National Hemophilia Foundation. I was recently touched when I learned that the New York City Hemophilia Chapter made a donation to the Victory for Women campaign in my honor!

You can also sponsor a child with hemophilia in a developing country through Save One Life. Despite some tough economic times here, we still live like kings compared to an average day in their lives. Visit www.SaveOneLife.net to see some children in need.

And remember the great words of Winston Churchill: We make a living by what we get, we make a life by what we give. Let’s make 2011 a year of giving.

Great Book I Just Read
Deliverance by James Dickey
I had to read this after writer Pat Conroy noted it as one of his top five favorite books. I had seen the excellent movie, which contains one of those lines that has gone down in movie history. The book, my second on a Kindle, is excellent, too. Terse, exciting, horrifying, it pits man against the elements, man against society and man against himself. Everything balanced becomes unbalanced as four city slickers take a canoe for a weekend down the last great river of Missouri before it gets dammed. They encounter much more than they ever thought, leading to questions of justice, revenge, poverty, retribution, evil and survival. Three stars.

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