Reno – Walkers, runners, families, teams and individuals are invited to Northern Nevada’s largest event supporting the inherited bleeding disorders community: the Reno Hemophilia Walk & 5K on Saturday, September 17, 2016, at Bartley Ranch Regional Park.
The Reno Hemophilia Walk promotes awareness of the many types of inherited bleeding and clotting disorders, and funds the Nevada Chapter of the National Hemophilia Foundation’s efforts advocating on behalf of those affected by hemophilia, von Willebrand disease and other bleeding disorders.
To register for the Reno Hemophilia Walk, go to walk.hemophilia.org/lasvegasreno. Registration begins at 9 a.m. at the Bartley Regional Park Plaza Pavilion. The walk/run begins at 10 a.m. After the walk/run, attendees will enjoy a barbecue, fun activities, and a team t-shirt contest. For additional information on registration, contact Anne at 702-564-4368 or amcguire@hemophilia.org
The majority of funds raised through the walk will be used to send children with inherited bleeding disorders — along with siblings — to a special, medically supervised summer camp at no cost. Camp Independent Firefly offers kids the chance to interact with others like themselves, and to feel supported while also learning independence in how they live with their life-long condition, for which there is no cure.
“Camp Independent Firefly is a wonderful asset because it offers these kids the kind of freedom they usually don’t have,” said Kelli Walters, Executive Director of the Nevada Chapter of the National Hemophilia Foundation. “So often, kids with inherited bleeding disorders are discouraged from being too active due to concerns about their safety or causing a possible bleed. With medical staff on-site the entire week, Camp Independent Firefly is a safe and uplifting place filled with adventure.”
Inherited Bleeding Disorders Facts:
- More than 20,0000 families in the United States are affected by inherited bleeding disorders
- Those with inherited bleeding disorders lack a protein that allows their blood to clot normally
- To control bleeds, a medicine called factor is often infused
- Hemophilia is most often passed from mother to son, but girls can also be affected
- Von Willebrand disease affects males and females equally
- One percent of the population is affected by von Willebrand disease, but one in 50 people may not know they have it.
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About the Nevada Chapter of the National Hemophilia Foundation
The mission of the Nevada Chapter of the National Hemophilia Foundation is to improve the quality of care and quality of life for people with hemophilia, von Willebrand Disease, and other inherited bleeding disorders. Founded in 1990 as the nonprofit Hemophilia Foundation of Nevada, the chapter merged with the National Hemophilia Foundation in 2011. It is the only educational, advocacy and support organization working on behalf of Nevada’s inherited bleeding disorder community. Services provided by the chapter include emergency financial assistance, sponsorship of seminars on issues important to the bleeding disorders community, dissemination of information as well as awareness of the complications of the disease to the general public, media and healthcare providers. Also, the chapter publishes a newsletter to keep members better informed. Additional information can be found at www.hfnv.org or by calling (702) 564-4368.