Tres Major- LHF Board President, Lori Keels- Executive Director, Jennifer Crawford- NHF Education Manager and Phil Despommier- Bayer Healthcare Representative (please list the names with those two pics)

Team Hemophilia is a project sponsored by Bayer Healthcare and NHF. This project consists of the National Youth Leadership Institute (NYLI) and an NHF Representative, Jennifer Crawford,  that travel around the country visiting Hemophilia Chapters and holding programs for the youth between the age of 13 and 19.

They were in Baton Rouge, LA on Tuesday, June 2, visiting the Louisiana Hemophilia Chapter . A BBQ lunch was provided under the bus canopy and then a program was held in a conference room in the office building for the youth. The event was enjoyed by all.

Special thanks go to the parents that took time out of their busy schedule to get the youth to the event and to Phil Despommier of Bayer for all of the assistance and guidance that he offered to the LHF office and of course to NYLI for their time and dedication to such a wonderful program. A special thanks goes out to the Wilson Foundation for hosting our event at their facility.

For more information on Team Hemophilia go to www.teamhemophilia.org

The History of the Hemophilia Foundation of Nevada

The Hemophilia Foundation of Nevada was founded in 1990 by Renee Paper, RN., CCRN.  Renee was a local emergency room nurse here in Nevada with a bleeding disorder called vonWillebrand disease.  She grew up in Southern California and when she first came to Nevada she was quite shocked to realize there was basically no comprehensive care for patients with bleeding disorders in this state.  In fact, Renee was told to move back to California if she wanted to receive services and become a Medicaid recipient.  This was not acceptable to Renee and she was not about to leave her job and her home in order to receive the proper care.  She decided to change that situation for herself and any other person going through the same difficulties here in Nevada.

Renee diligently and persistently took the steps necessary to bring about the foundation when she came across some help from the Federal Region IX.  The Hemophilia Foundation of Nevada was open for business, running the office out of a spare bedroom in her home.   The foundation became a tax-exempt organization in January of 1992.  Renee soon drafted a well-rounded Board of Directors to help carry out the mission of the HFNV.   Some of the original members are still serving on the board today.  Renee knew how to attract professional, quality people, that understood the necessity of the work carried out by this foundation. 

As a Triage nurse at St. Rose Dominican Hospital, Renee acquired the first public office space for the HFNV, directly across the street from the Henderson De Lima Campus.  She made the deal of the century with a rental fee of $1.00 per year.  The HFNV stayed at that location until January of 2005.  Renee traveled extensively teaching and networking for the foundation.  Renee solicited help from many people at a state and national level.  Renee has become world renowned for her knowledge on bleeding disorders and for co authoring the first book on vonWillebrands disease called “A guide to Living with von Willebrand Disease”, with Laureen A. Kelley.

The foundation grew and with her guidance and help the state of Nevada could now identify the number of bleeding disorder patients in order to better serve them.  Many fundraising events were put in place that would help with operating costs such as a Las Vegas Golf tournament and Motorcycle Fun run.  Consumers were offered social events where they could gather to compare notes and develop friendships. Because of Renee, consumers now had peer support anytime they needed it.  A friend was only a phone call away. 

Then with the help of Jonathan Bernstein, M.D., the first Federally Funded Hemophilia Treatment Center of Las Vegas was born.  Nevada now had its own fully staffed treatment center for the bleeding disorder community. This was a dream come true, for Renee and every other person affected in the state.  The foundation proudly works with the treatment center as a team to ensure the needs are met for our bleeding disorder community. 

Patient services increased to northern Nevada and now the HFNV reaches out to the entire state of Nevada with programs and services.  Our fundraising events also spread to northern Nevada as well.  In 2003 our HFNV summer camp program was born.  The summer camp program has been incredibly successful.  So successful, that our new northern Nevada Summer Camp, Camp Eagle Spirit, will be held in Elko, Nevada, this year.  Summer camp changes the lives of the children who attend.  It is a vital, educational and coping tool for our youth.  Renee Paper changed the quality and care of life for people with bleeding disorders living in the state of Nevada.  Thank you, Renee.

Due to serious illness Renee is no longer able to continue her work with the foundation.  If you would like to drop her a line to say hello, please forward them to the HFNV office and we will forward any cards or letters.        

The Hemophilia Foundation of Nevada will continue to grow and serve the bleeding disorders community.  If you would like to volunteer or help in any way please contact the HFNV office.  Our growth and success depends on the people behind it.  Together we can build a strong foundation that will change the quality of life for persons affected by bleeding disorders, for many, many years to come.