Save One Life

Our Heritage, and a Great Mother’s Day Gift


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.

Jambo Kilimanjaro!

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!



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.

Namaste from New York!


Last Tuesday I dusted off my salwar kameez outfit from Pakistan, hopped on a plane with executive director Martha Hopewell of Save One Life, our child sponsorship nonprofit, and went to New York City for a wonderful fundraiser called “Bollywood Chic,” hosted in the art studio of Hunt Slonem.

The studio takes your breath away: cavernous at 15,000 sf, and filled from ceiling to floor with framed art, statues, and even a museum quality collection of butterflies that was stunning. In the center of the studio: bird cages filled with colorful macaws and doves. Hunt’s specialty is painting birds; you can see his famed parrots on a new Tiffany set of serving ware. The birds are raucous when not being fawned over; they demand attention by screeching. This added an exotic flavor to the evening!

How did we snag the goodwill of an artist of Hunt’s calibre? Through board member Tara Reddi, who is vice president of the Marlborough Gallery in New York, and has a nephew with hemophilia in India.

Guests arrived around 6:30 and stayed till 9, sampling some wonderful Indian-style food, and wine at our bar, and listening to Bollywood soundtrack. Guests could wander freely throughout the studio, which is subdivided into different rooms, each with a theme. The Lincoln room is filled with Hunt’s portraits of Lincoln in many colors. Another room is filled top to bottom with framed paintings of rabbits. Another room is filled with Greek or Italian statues. Another room contained a massive round table and filled with candles, looking like an invitation to a seance! Guests were really intrigued by the decor!

We were pleased to have with us Dr. Ranjan Kulkarni from the Nasik Chapter of the Indian Federation of Hemophilia. She is our program partner there, and has enrolled many children with hemophilia in Save One Life. She just happened to be visiting in New Jersey, which worked out perfectly! The fundraiser gave her a chance to meet two other doctors and sponsors: Dr. Lucy and Dr. Shipra, both attired in lovely Indian dresses!

Save One Life now sponsors over 550 children in nine countries, giving them funding that they would normally never receive. Funding is used for transportation to clinic, to buy medicine, and to pay school fees. The nonprofits that administer the program–our program partners–check in regularly with the children, to ensure they are doing well. So more than just a charity, we are guaranteeing these kids get seen, are known and are helped.

Mena, Dr. Ranjan Kulkarni and Laurie

Our deepest thanks to Hunt Slonem for generously allowing us the privilege and pleasure to spend an evening at his studio. Thanks to Tara Reddi for organizing this marvelous event, which required a lot of hard work. Thanks to all the guests who showed up despite the dreary weather, many of whom were friends and patrons of Tara’s and Hunt, and who supported the fundraiser. And thanks to my friends at NHF, whom I was so happy to see present!

Many thanks to two companies who helped underwrite the event: CSL Behring and Inspiration Biopharmaceuticals. All proceeds of the event will go towards our India program, where the bulk of our beneficiaries are located. I’ll be traveling to India in September to check on our program and will be sure to keep everyone posted. Namaste!

For more information or to sponsor a child in need: www.SaveOneLife.net
Also see: www.cslbehring.com, www.inspirationbio.com, www.marlboroughgallery.com

The Hemophiliac Who Got High

Not that kind of high, but really high, like Mt. Ranier high. Jeff Salantai, who has hemophilia, and Eric Hill, president and founder of BioRx, a home care company, undertook the grueling challenge of climbing Mt. Rainier, in order to raise funds for two nonprofits—one of them mine!

Mt. Rainier is the tallest glaciated mountain in the lower 49 states–only Alaska has one higher. It is located just outside of Ashford, Washington. Jeff is an account manager for BioRx and lives in Austin, Texas. Eric writes, “After more than 7 months of training and preparation, we attempted to summit the mountain the second week of August. We received tons of thoughts and prayers from many of you and we just wanted to say thank you to everyone who called or wrote wishing us luck. We summited the mountain at 7:20 am on Saturday, August 15, at 14,410 feet….so wiped out we could barely function (only to realize we had about 7 more hours of continuous trekking to get back down) but we did it.”

Most amazingly, is that Eric has pledged to match funds with anyone who wants to donate for their climb, for Save One Life, my nonprofit that sponsors over 500 children with hemophilia in developing countries.

Jeff Salantai

Both men agreed that this is was the hardest thing they’ve ever done. Eric writes, “I’ve run a marathon, done 4 more 23 mile runs, completed 5 Olympic length triathlons, climbed 2 other 14,000 ft mountains (no glaciers) and raced in 100k road bike races. Jeff likewise has done some pretty spectacular physical challenges like climbing the second and third largest mountains in the US, rock climbed some amazing cliffs, and has competed in 100 mile bike races on a routine basis. We both agreed that they all paled in comparison to the effort and mental trial of this experience.”

Incredibly, they are “99% sure” that Jeff is the first person living with hemophilia to summit Mt. Rainier. Jeff may now hold the record for the highest summit in the world by someone with hemophilia.

Their donations are so needed. I am visiting countries that no one in the hemophilia community has visited before and we are hoping to do outreach to find the people with hemophilia, who are as yet unidentified and suffering in silence. Please help, and show your support for the tremendous and risky fundraiser that Eric and Jeff undertook. I have never heard of any fundraiser quite like theirs!

Jeff and Eric write, “Thanks to everyone for everything you’ve done and the support you’ve provided to both of us.”

Congratulations to Jeff and Eric, two courageous and determined men with hearts of gold.

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