Nevada Chapter of the National Hemophilia Foundation Steps Up this Fall with UNITE for Bleeding Disorders Walk on Saturday, September 25
Support Las Vegans with Bleeding Disorders at Annual Event at Floyd Lamb Park
The Nevada Chapter of the National Hemophilia Foundation (NHFNV) makes big moves for 2021 bringing all three of the UNITE for Bleeding Disorders walks in person to the communities of Las Vegas, Reno and Elko. Aiming to raise both awareness and much need funding for hemophilia and other bleeding disorders, the National Hemophilia Foundation invites all Las Vegans to lace up their sneakers and step out for a cause on Saturday, Sept. 25. This year, the Annual Unite for Bleeding Disorders Walk in Las Vegas will be held in person at Floyd Lamb Park (9200 Tule Springs Road). Friends of the bleeding disorder community can also choose to participate virtually if they are unable to attend the event in person. This annual fun walk allows participants to walk in celebration or honor of those affected by bleeding disorders and assist in NHFNV’s overall mission to find cures for inheritable blood disorders, as well as address and prevent complications of these disorders through research, education and advocacy.
The morning of fun and awareness kicks off at 9:30 a.m. with registration, check-in, and vendor booths, followed by the opening ceremonies at 10:00 a.m. with the walk beginning at 10:15 a.m. followed by individual and team awards. Out of an abundance of caution for our most fragile participants, all walkers are asked to wear masks and socially distance throughout the morning of the walk. In addition, all attendees are asked to pre-register for the event. Additional safety protocols and guidelines are subject to change and based on county, state and CDC recommendations for a medically fragile population.
Online registration is available at www.hfnv.org and clicking on the Events tab. Attendees will enjoy music, activities and team t-shirt designing contests. Those individuals who personally donate $30 or more will receive a special UNITE for Bleeding Disorders t-shirt.
All funds raised through the Unite for Bleeding Disorders Walk stay in Nevada, with the majority of proceeds used to fund youth development programs including sending children with bleeding disorders, as well as their siblings, to Camp Independent Firefly, a medically supervised summer camp. Children, aged seven to 17, pay nothing to attend camp and are able to interact with campers also affected by bleeding disorders. At camp, these children are able to gain independence and knowledge about how to live with their life-long condition, while in a fun-filled, true camp experience.
“As the only nonprofit organization supporting Nevadans with bleeding disorders, it’s vitally important we can continue to provide the resources, education and support that our community relies upon, especially as we emerge from the Pandemic,” said Betsy VanDeusen, Executive Director of the Nevada Chapter of the National Hemophilia Foundation. “As our largest fundraiser, the Unite for Bleeding Disorders Walk will ensure we can continue to be there for our families when they need us most.”
The Nevada Chapter of the National Hemophilia Foundation welcomes the Hemostasis and Thrombosis Center of Nevada, Novo Nordisk, CSL Behring and Genentech sponsors for 2021.
Bleeding disorders, a group of disorders that share the inability to form a proper blood clot, include hemophilia, von Willebrand disease, and rare factor disorders. Improper clotting can be caused by defects in blood components such as platelets and/or clotting proteins, also called clotting factors. Bleeding disorders are characterized by extended bleeding after injury, surgery, trauma, or menstruation. Currently, there are no cures for bleeding disorders, and treatments vary depending on their severity. For some bleeding disorders, there are clotting factor concentrates that can be infused prophylactically or on-demand at home, to prevent or treat bleeds.
Bleeding disorders are life-threatening, debilitating, and expensive to treat. A child with severe Hemophilia will spend over $200,000 annually to prevent bleeding. Some children and adults build up inhibitors to the treatment and the costs can exceed $1,000,000 per year. Failure to preventatively treat the disorder can result in prolonged painful bleeds that cause permanent and severe damage. The entire family is affected by the bleeding disorder physically, emotionally, and financially. With more than 30 years of experience, NHFNV provides programs and services to people affected by bleeding disorders so that they can better cope and can become self-advocates for themselves and/or their family. NHFNV partners with the Hemostasis and Thrombosis Center of Nevada, other agencies, and medical professionals to provide programs and services unique to those with bleeding disorders to best meet their needs.
About the Nevada Chapter of the National Hemophilia Foundation
Founded in 1990, the Nevada Chapter of the National Hemophilia Foundation is dedicated to finding cures for inheritable blood disorders and addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. Donations stay right here in Nevada, providing family services, youth development, and emergency funds to help patients reach a productive, pain-free and independent future. Over 300 volunteers annually support more than 30 programs and events like Camp Independent Firefly and the Unite for Bleeding Disorders Walks. Additional information on the NHFNV can be found at www.hfnv.org and social media @NevadaNHF on Instagram or Twitter and @NVNHF on Facebook.
