Save One Life Hosts Gala to Celebrate 15 Years of Helping Kids with Hemophilia

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by Charles Moore |

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Save One Life

saveonelifelogoSave One Life, the first globally focused organization to sponsor children with bleeding disorders one-on-one, recently celebrated its 15th anniversary. More than 130 guests from the hemophilia community worldwide gathered in New York City Sept. 29 at the Manhattan Penthouse on Fifth Avenue.

The guest of honor was retired Major League Baseball shortstop Tony Fernandez, of the 1993 World Series winning Toronto Blue Jays.

sol1Save One Life founder Laureen Kelley with guest of honor Tony Fernandez and mothers of children with hemophilia, Sunita Bhattarai of Nepal and Myrish Antonio of the Philippines.  Photo courtesy of Save One Life.

Fernandez was recognized for his three-year participation at a camp for children with hemophilia in the Dominican Republic.

Others honored at the event included Eric Hill of Diplomat Specialty Infusion, who received the 2016 Sponsor of the Year award for co-organizing two Save One Life fundraising climbs up Mt. Kilimanjaro, for sponsoring 31 children, and for being the first contributor to the Save One Life endowment fund; Usha Parthasarathy, a mother of two children with hemophilia, who received the Inspiration Award for helping establish chapters of the Hemophilia Federation in India as

haardeCyclist Barry Haarde participated in five Wheels for the World cross-country tours to raise awareness and funds for Save One Life.  Photo courtesy of Save One Life.

its vice president of development and for serving as a Save One Life volunteer coordinator since 2005; and Barry Haarde, a cyclist with hemophilia and HIV, for completing his fifth cross-country Wheels for the World tour in September and raising more than $220,000 for Save One Life.

kelley3Save One Life founder Laureen Kelley and executive director Martha Hopewell flank 2016 Inspiration Award winner Usha Parthasarathy. Photo courtesy of Save One Life.

One of the event’s highlights was a performance by 16-year-old pianist and Save One Life beneficiary Mihai Stefanescu of Romania. Despite bleeds in his fingers and wrists and limited financial resources for piano lessons, Mihai is an international piano competition winner.

stefanescuSixteen-year-old Save One Life beneficiary and award winning pianist Mihai Stefanescu of Romania performs for guests. Photo courtesy of Save One Life.

The event’s major sponsors were FFF Enterprises/NuFactor, Octapharma, and ASD Healthcare. Biogen and Novo Nordisk were gold sponsors; and Alnylam, Bayer HealthCare, BioRx-a Diplomat Company, and New England BioLabs were silver sponsors. CSL Behring and KYNE supported founders tables.

Laureen Kelley, the mother of a child with hemophilia and the author of a how-to guide on parenting children with hemophilia, created Save One Life in 2001 to provide direct financial assistance to children with bleeding disorders who come from financially needy families. About 1 in every 5,000 infant boys are diagnosed with hemophilia, a rare genetic dysfunction that prevents blood from clotting effectively. Left untreated, the condition can cause prolonged internal bleeding, painful joint deformities, crippling, and even death.

Before establishing Save One Life, Kelley’s LA Kelley Communications company printed a newsletter serving the hemophilia community in the U.S. By 1996 she was hosting educational tours in nations where many families had little knowledge of hemophilia and limited access to proper medical care or treatment. Many of the families lived in poverty. Those experiences inspired her to establish Save One Life.

Save One Life now operates in 13 countries: Bangladesh, Cambodia, Dominican Republic, Ghana, Honduras, India, Kenya, Nepal, Nigeria, Pakistan, the Philippines, Romania and Uganda. The organization offers four ways to donate: direct financial sponsorships, post-secondary scholarships, micro-enterprise grants, and hemophilia camps.

According to Save One Life, more than 1,700 children and families have benefited from the organizations’ activities.

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