Save One Life: 15 Years Helping Children with Hemophilia Around the World

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First organization in the world to sponsor vulnerable children who suffer from life-threatening bleeding disorders celebrates its success

My family is very thankful to have such a kind person helping my son. Take care always and God bless!

Save One Life celebrated its 15th anniversary in New York City on September 29. More than 130 guests representing the US and world hemophilia community and industry gathered at the Manhattan Penthouse on Fifth Avenue for cocktails and dinner.

The guest of honor, Tony Fernández, famous Major League Baseball shortstop, was recognized for his attendance at hemophilia camp in the Dominican Republic for three years. Eric Hill, COO of Diplomat Specialty Infusion, received the 2016 Sponsor of the Year award for co-organizing two fundraising climbs up Mt. Kilimanjaro for Save One Life, sponsoring 31 children and being the first to contribute to Save One Life’s endowment fund. Barry Haarde, a cyclist with hemophilia and HIV, was recognized for completing his fifth cross-country Wheels for the World tour in September--he has now cycled over 20,000 miles and raised over $220,000 for Save One Life. Usha Parthasarathy, mother of two children with hemophilia, received the 2016 Inspiration Award for helping to establish patient chapters for the Hemophilia Federation (India) as vice president of development, and for volunteering to help coordinate Save One Life’s programs in India over the past seven years.

The highlight of the evening was a piano performance by 16-year-old Save One Life beneficiary Mihai Stefanescu of Romania, who, despite the challenge of bleeds in his fingers and wrists and limited resources to afford piano lessons, has won national and international piano competitions.

Major sponsors of the gala were FFF Enterprises/NuFactor, Octapharma and ASD Healthcare. Biogen and Novo Nordisk were gold sponsors; Alnylam, Bayer HealthCare, BioRx-a Diplomat Company and New England BioLabs were silver sponsors. CSL Behring and KYNE supported Founder’s Tables.

Since 2001 Save One Life has provided direct financial assistance to some of the world's most vulnerable children: children who not only live in dire poverty, but who also face the daily challenge of a bleeding disorder—most notably, hemophilia. Hemophilia is a rare genetic disorder that prevents blood from forming an effective clot. Occurring in one out of 5,000 male births, untreated hemophilia can cause prolonged internal bleeding, painful joint deformities, crippling and even death.

Save One Life was founded by Laureen Kelley, mother of a child with hemophilia and author who wrote the world’s first how-to guide on parenting children with hemophilia in the early 1990s. Her firm, LA Kelley Communications, publishes the oldest US newsletter serving the hemophilia community.

By 1996 Kelley was traveling to other countries to educate families on hemophilia—countries where many families had little knowledge of hemophilia, little access to proper medical care or treatment, and lived in desperate conditions. These experiences prompted her to establish Save One Life to provide one-on-one, grassroots help to children and families in need.

Today Save One Life operates in 13 countries: Bangladesh, Cambodia, Dominican Republic, Ghana, Honduras, India, Kenya, Nepal, Nigeria, Pakistan, the Philippines, Romania and Uganda. It offers donors four ways to assist children: direct financial sponsorships, post-secondary scholarships, micro-enterprise grants and hemophilia camps. The transfer of funds is achieved through partnerships with over 40 patient organizations and local nonprofits that identify needy children and monitor their progress and use of funds. More than 1700 children and families have benefitted from Save One Life’s activities.

One of Save One Life’s scholarship recipients, Kannan K.S. of Kunnamkulam, India wrote: “I do not know how I can adequately convey my gratitude to Save One Life. You have changed my vision and my dreams. I thank you for myself and on behalf of my family for your kind and great support of my education.” With Save One Life, children truly are helped…one at a time. To learn more visit http://www.SaveOneLife.net.

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Martha Hopewell
Save One Life
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