SPECIAL GUEST ANNOUNCED! NYCHC Dedicates Guinness World Records® Attempt to Hemophilia Families in Nepal

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NYCHC Dedicates Guinness World Records®
Attempt to Hemophilia Families in Nepal
 
The New York City Hemophilia Chapter (NYCHC) has announced that it will dedicate its effort to set a Guinness Word Record for the Largest Self-Care Lesson to helping families affected by bleeding disorders in Nepal who were negatively impacted by the recent earthquake.
 
The attempt will take place at the New York Marriott at the Brooklyn Bridge (333 Adams Street, Brooklyn, NY) on Saturday, May 2 at 2pm. Hundreds of members of the bleeding disorders community will participate in an infusion lesson to set the new record.
In light of the recent devastation in Nepal and its particular impact on families affected by bleeding disorders, NYCHC has decided to dedicate the attempt to the community in Nepal and to use the event to raise funds for relief efforts. Everyone participating will be asked to donate any amount they choose, and NYCHC will match everything donated at the event dollar for dollar.

Click Here To Register For This Event (Advanced Registration Required)

Our special guest, pictured below, is Ujjwal Bhattarai.  Ujjwal is a founding member and Chairman of Save One Life. He is a Internet Marketer focusing on Search Engine Optimization, Search Engine Marketing as well as web development. He holds a Master’s degree from Texas A&M University. He plays a vital role in the sponsorship program in Nepal. He lives in Connecticut with his wife and son.  His 14 year old son has hemophilia.  Ujjwal is a native of Nepal.

 

Save One Life is a registered nonprofit international organization that offers individuals, families, companies and/or organizations the opportunity to sponsor a child or adult with a bleeding disorder in a developing country. 

Save One Life is a nonprofit organization that offers sponsorships directly to individual children or adults with a bleeding disorder in developing countries. Unlike many other child sponsorship programs where sponsor funds are pooled, Save One Life beneficiaries receive money directly from their sponsors, with only a small percentage given to the national or local hemophilia nonprofit organization that registers and cares for them. 


We are thrilled to have Ujjwal and his son as our special guests tomorrow.  Ujjwal will be speaking at the event to provide updates on the current situation in Nepal after the devastating earthquake.

 
All collected funds will be sent to the Nepal Earthquake Relief Fund of Save One Life, a registered nonprofit international organization that offers individuals, families, companies and/or organizations the opportunity to sponsor children or adults with bleeding disorders in developing countries. For several years, NYCHC has sponsored Nitesh Aryal, a fifteen year old boy with hemophilia in Nepal. Fortunately, we have word that Nitesh and his family are safe. However, the earthquake has devastated the country and impacted the local hemophilia community. From reports, we know that damage is extensive and very few will escape unaffected. We know of four deaths in the community so far, one of whom was a Save One Life beneficiary. The Nepal Earthquake Relief Fund will be used to help those specifically within the Nepalese bleeding disorder community needing to rebuild their homes, cover medical expenses, and pay for burials and other expenses resulting from this disaster.

Click Here To Register For This Event (Advanced Registration Required)
 
More About Hemophilia in Nepal

An estimated 3 thousand people live with hemophilia in Nepal, but only 339 have been identified and registered so far. Most are poor and do not have access to education, health, or employment. Factor concentrates, the mainstay of treatment, is expensive and beyond the reach of most Nepalese. The government does not purchase factor and has not as yet responded to campaigns aimed at changing this policy. Patients therefore depend on cryoprecipitate or donated factor. Nepal Hemophilia Society (NHS) was formed by a volunteer group of patients with bleeding disorders and parents in 1992. It aims to provide comprehensive care to person with hemophilia (PWH) and to unite them into a community motivated for self-help and mutual support.

 
 
 

 

 

 

 

Photo: Family of Nitesh Aryal, a fifteen year old boy in Nepal living with hemophilia. Nitesh (in the red sweater) is sponsored by the New York City Hemophilia Chapter through Save One Life.

Click Here To Register For This Event (Advanced Registration Required)

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