www.saveonelife.net

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.

Charitable Thoughts


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.

India Day 9: Hyderabad to Calcutta

Usha and I flew in last night to Calcutta, the “City of Joy,” location of the famous Patrick Swayze movie by the same name, and of course, Mother Theresa’s mission. We arrived quite late at night after a short flight from Hyderabad. Let me backtrack and finish up with Hyderabad. Camp was on Wednesday, and on Thursday, we awoke at 4: 30 am–Usha, Dr. Prasad and I drove to Hyderabad, a 5 hour ride.

We stopped around 9 at a restaurant and had some breakfast: eggs and toast for me, and delicious Indian tea, which while not spicy has some sort of zing to it. Really delicious and milky. Then back in the car, which was a luxurious ride, as the car seems to be new and is covered with terrycloth towels. We passed long stretches of fields, and many villages, all seemingly the same. Buffalo pounded the shoulders, and various roadside shops zipped past.

Entering Hyderabad, it got busier and busier, and then crowded. There are hundreds and thousands of motorbikes. The streets were pulsating with them. Huge buildings, large billboards: Hyderabad is one happening place. We drove to the Nazim’s Institute of Medical Services, where the local chapter heads and doctors awaited us outside. Inside, patients were waiting for Usha and me in the hallway, some eager, some confused. There was quite a bit of nervous energy: while I was speaking to one set of parents, someone would interrupt, start a new conversation, introduce me to someone else… quite confusing! Everyone seemed angling and positioning for attention. And why not? Everyone needs financial assistance and factor, and those we can provide.

All of these patients were really lovely to interview. When I met an obviously Muslim family, I said “Assalam a laikum,” and their eyes lit up in surprise. Just a smile and “Namaste” was enough to get everyone connected. The team served that lovely Indian tea; the only thing is, the dainty Indians serve it in a thimble size cup, while we Americans, especially this American, love to swig it down by the 12 ounces Dunkin’ Donuts size! Appreciating the cultural differences, they served me two cups.

Meeting them one by one, I was able to get the baby smiling, the little boys to relax, and the teens to loosen up. Most families earn about $25 a week, nothing. They really need help. All they want is a chance, a shot at life: the opportunity to go to college, be educated and get a job. The families all want and need help; the appeal in their eyes was plain. Who can help them? Who cares about impoverished patients with hemophilia? If we in the developed countries have no pity in our hearts, and turn away from them, who will help them? I always think, what if that were my precious baby with hemophilia? I would pray day and night for someone to help. I wanted to touch those boys’ souls, change their lives… come back again soon. Who are they? What do they feel? What can we do for them?

Back at the house, we sat outside on the veranda before dinner in the dusk, to relax. We heard the mosque call to prayers. I thought, here we are Christian and Hindu with the Muslim prayer calling out over the city… beautiful… like kindred spirits united against the common enemy of poverty.

On Friday morning, we had a rare day off. We decided to tour the city. We drove to the old section, to a busy bazaar, and I loved it! I hopped out of our car, dodged the speeding cars and motorbikes and snapped some photos. Usha and I checked out a temple of the goddess of wealth, Lakshmi. We visited a dress shop and I had fun selecting a few Indian salwar kameezes—less than $15 an outfit. I was feeling out of place with my Western clothes. We stopped for lunch at a nice restaurant, where I had dhosa and coconut: delicious! Back to the house, pack and we were ready for our flight to Calcutta, which is where I am now.

Upon arrival at 10:30 pm last night, we were greeted our colleagues, Mr. Oja and Sudip Chatterlee, members of the executive board of the Calcutta Chapter. The relatively cool 76 degrees last night belied a brutally hot day today.

I haven’t ever seen much of Calcutta though it was my second visit. I visited in 2005 on another whirlwind visit of India, and only stayed 24 hours. I longed to see more of it, as I only know one part of it and probably not representative. I awoke this morning, opened my hotel window and was greeted by a big green, polluted pond, where workers were, at 7 am, already vigorously beating sheets and towels against rocks; I wondered if my sheets would end up there today?

Calcutta is huge and grimy, and even the paved streets seemed to perpetually throw up a cloud of dirt. Yet I see a lot of progress in the five years since I was last here.

The Calcutta Chapter was only a stone’s throw away, and we zipped off there to met with patients this morning. We interviewed 10 patients in five hours, and I must say, I saw some really great things, and some heartbreaking things.

First the great things: Calcutta was one of our first cities to enroll in Save One Life, and now I can see the payoff. The boys we enrolled eight years ago are now finished with college and getting jobs. They are paying for their factor. Some are even thinking of going back to school for further degrees! Many of them are quite handsome and came to the center to see me, well dressed. For example, Nazbul is now a tailor, even though he is only 18. With the Save One Life money from sponsor Eric Hill, president of BioRx, he bought two electric sewing machines, and earns $30 a week, which is way above what most of our beneficiaries are earning. Previously, he considered himself very poor, but now he is sustaining himself and even buys factor.

But we also met little Mokhesh, age 14 but so slim and tiny. He had chest pains, and he writhed in pain a lot during the interview. He and his father had traveled 5 and a half hours to come here.
We gladly paid for their transportation, and concerned, we arranged for him to have an infusion, as I brought with me donated factor. Without this donation, though, he would have to wait for hours to get the cryo or plasma into him. We had a long talk with the chapter about why they don’t get any donated factor. All over India chapters are finagling to get donations: why not Calcutta? The team didn’t seem to know where to turn to for donations (despite that I run Project SHARE and it’s right on the internet). I think after this visit, we will have them more aware of how to get factor. We also saw a huge need for physical therapy. The boys all have contractures and very weakened musculoskeletal systems. Usha began thinking of ways in which to get programs started.

Above all, I saw connection and compassion. Tanuka, the administrator of Save One Life for the chapter, was our kind of gal—she knew every single patient by name, and all their relevant information. No one else there had the connection to patients like her. With this detail, she could ask better questions of them, and could determine their needs best. When one young man, 29, said he sat around watching TV all day, she said pretty much that’s it—no school, no work, no Save One Life funds. He was given a deadline by which to get his life going again, despite his obvious poverty and disabilities.

One boy who made a strong impression on us was Toten, 21, who lives three hours away. He was very quiet during the interview, until the end. Then he shared with us his dream: He’s attending electrical engineering school, and once he is successful, he wants to help others, to give back. That’s one of the first times I had heard any of our beneficiaries say that, and it pleased us. We feel that with our blessings, we can give back. Poverty becomes less a socioeconomic level, and instead becomes an attitude. If Toten, who earns about $1 a day can give back someday, then we all can.

Next stop Durgapur, a four hour drive!

The India Odyssey Begins

Indira, Usha and Krish

I feel like I am in the movie Eat Pray Love. India: where eating is a pleasurable ritual to welcome a visitor like me, where praying is sometimes the only thing left when you suffer a bleed without treatment, and where love abounds when we bring donated factor and funding from Save One Life. It’s Day 2, and I am in Trivandrum, on the very southern border, right on the Arabian Sea. A thundercloud is rolling in, and I expect to be deluged with a monsoon soon.

I’m here as part of a site visit and check up for our nonprofit Save One Life. This is a child sponsorship program for those with hemophilia in developing countries. Despite all our best efforts and our lobbying initiatives, we simply cannot wait for governments to one day buy factor for its bleeding disorder patients: children are dying and we can do something about it right now. Our approach at Save One Life is to match sponsors in developed countries with impoverished children and adults in need in developing countries. I’ve seen it over and over in our 11 partner countries: $20 a month can actually change a life for the better.

With “Magi,” our gracious host

India was our first country to enroll, and is our biggest country partner, with 315 beneficiaries. I’m trying to visit as many as possible. I’ll be visiting about 10 cities in 17 days, logging over 19,700 miles by plane, auto and even overnight train. Totally worth it.

I arrived Thursday night after a smooth 15 hours flight to Delhi, the capital, and was met warmly by longtime friend Usha Parthasarathy, mother of an adult with hemophilia, and our Save One Life liaison in India. Usha worked for many years with the Hemophilia Federation (India) and seems to know everyone. She is dedicated, tireless and totally passionate about helping to improve the conditions of those with hemophilia in India.

We were so fortunate to be able to stay, free of charge, at the lovely home of the mother-in-law of Dr. Shipra Kaicker from Brooklyn, New York, whom I met at our fundraiser in NYC earlier this year. She sponsors a little boy in Delhi (whom I met) and her generous offer helps us to save money. She also visits Delhi and helps patients there medically. There are so many angels like her and Usha in this community, I feel like I live in heaven!

with SOL beneficiaries at Lions Hospital

On Friday we visited Lions Hospital, and were greeted by my dear friend Indira Venkataraman, a 78-year-old who also seems tireless in her quest to help her patients. Indira’s adult son with hemophilia had just died earlier this year, but despite her grief, Indira has not nor will ever quit on her patients. She is always in the clinic, always pouring out her love and concern to the boys.

Krish supporting Andy Matthews’ blog!

With us was Krish, a 36-year-old with hemophilia from Chennai, who has become an important link to all beneficiaries. Krish is the first international employee of Save One Life—and I foresee the day when we are employing people with hemophilia in many countries to run our growing programs. Krish has a full time job in advertising and marketing, but spends many nights each week, working up till midnight, to help us compile reports on individual patients, ensuring funds are distributed and coaching chapters on how to implement the program. I was thrilled to meet him, and was so impressed with his intelligence, education and above all, dedication. He is so passionate about Save One Life! His enthusiasm really gave me a huge energy boost and affirmed that all our hard work to make Save One Life reach the poorest of the poor on this earth has been effective.

With Amit and mother

A group of patients gathered to meet us, among them the child I sponsor, Suraj Tanti. As this is my third trip to India, it was delightful to see him again. The initial awkwardness of meeting from years past has melted away to a feeling of reunion, joyful and enthusiastic. Usha, Krish, Indira and I spent the afternoon meeting with each family individually, taking photos, chatting and answering any questions they had. Yes, it’s very time consuming—a combination of doing social work, journalism and administration. But what a joy, to hear how sponsorship funds have helped keep a young boy in school, or helped a family get medical treatment.

Jittender

One of the boys I recognized instantly was Jittender. I met him first in 2005, and he had a haunted look to him. We immediately got him a sponsor, but the sponsor eventually couldn’t keep up the payments. Jittender lost his sponsorship for a while. This really bothered me. Recently, our own chairperson, Chris Lamb, sponsored him, and Jittender this day looked great, and happy. He has put on weight, his joints look good and best of all, he is going to tourism school! He has a future.

After all the interviews, it was time to return to the house, change gears and then go to the Annual General Meeting of the Hemophilia Federation. Delhi is about to host the Commonwealth Games, and I have never seen so much construction! We maneuvered through rush hour traffic, and arrived at the event location. It was wonderful to see the heads of India’s 65 chapters, many of whom I have met over the past 10 years, in India and overseas. It was such a happy reunion! Dr. Maganti, Raghu, Siddhartha, Dr. Devila, Dr. Suresh, Dr. Ranjani and Dr. Ghosh, Rashid… I only wished I could have stayed longer.

After an opening by Mr. Roy Chowdury, the chairman, I gave an overview to all the chapters about Save One Life. While many chapters are now enrolled with us, eventually we’d like all chapters enrolled. I presented the statistics: 315 beneficiaries enrolled, which means we are transferring over $60,000 dollars to India annually. At least 85% of this goes directly to families; the rest goes to the chapter to help offset administrative costs. Patients get money for food and transportation (always a major problem in developing countries). Krish also gave a report on how the program is implemented, how rigidly accountability and transparency are maintained (meaning, Save One Life is only for those nonprofits that can uphold our very high standards). Afterwards, Krish said he was deluged with requests to join by the Indian chapters. That’s good news, but first, we realized, we must get the 200 children on our waiting list sponsored. You can see their photos and names on our website at www.saveonelife.net.

With Priyanka

One of my greatest thrills was to finally meet in person someone I’ve been corresponding with for months about solving problems. A beautiful young Indian girl rushed over to meet me… Priyanka, a brilliant university student with a major in psychology, who also happens to have VWD. We had been planning to meet for a long time, which was finally here. We both felt like it was a dream, come true. And it was! Priyanka hopes to one day work with HFI when her studies are complete.

Our first full day in India was busy and satisfying. We had a late night meal with “Magi” (Mom), Dr. Shipra’s mother-in-law, and crashed… only to be awoken at 2 am with monstrous pipes being dropped, one by one by one, just overhead as Delhi prepared for another day of laying the foundation of a huge highway. Delhi… the city that never sleeps!

Please check in later! Remember this is a 19 day odyssey and I will be posting amazing photos, stories and hopefully videos about my journey through India…See this photo of a preview and check back in a day or so…

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

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