On Saturday, October 8, members and supporters of the bleeding disorders community will convene to raise money for the Nevada Chapter of the National Hemophilia Foundation (Nevada Chapter of NHF).
This is the first time since 2019 where those with rare bleeding disorders will join their supporters since the Covid-19 pandemic as previously the walk was done virtually or a hybrid of the two.
All Las Vegans ready to walk for support are invited to come out to Floyd Lamb Park (9200 Tule Springs Road) for the annual Unite for Bleeding Disorders walk. This annual fun walk allows participants to walk in celebration or honor of those affected by bleeding disorders and assist in Nevada Chapter of NHF’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.
“We’re thrilled to once again unite as a community and support Nevadans with bleeding disorders. Our organization is the only one in the state supporting this community, so it’s vitally important we raise funds and continue to provide the resources, education and support that our community relies upon,” said Jacob Murdock, 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 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. Following the walk, both individual and team awards will be presented.
Attendees are encouraged to pre-register for the event and fundraise for the chance to earn a variety of Unite for Bleeding Disorders incentives, including a walk bag, shoelaces and beach towel.
A history of bleeding disorders in Nevada will also be presented at the walk with former Nevadan, Renee Paper highlighted among that. Paper was a nurse in Nevada who suffered from von Willebrand Disease, a bleeding disorder commonly found in women. She wrote the book on the disease to international acclaim that is still used today, in addition to helping the Nevada Chapter get its start. The historical exhibit will focus on Paper and the history of the National Hemophilia Foundation as a whole, which is celebrating its 75thanniversary this coming year.
Online registration is available at www.hfnv.org by clicking on the Events tab. Attendees will enjoy music, activities and team t-shirt designing contests. Those individuals who personally donate $25 or more will receive a special Unite for Bleeding Disorders t-shirt and walk bag.
All funds raised through the Unite for Bleeding Disorders Walk stay in Nevada and support the many programs and services the organization provides to the bleeding disorders community throughout the state, including emergency financial assistance, educational programs, advocacy, summer camps for those with bleeding disorders and their siblings, and more.
The Nevada Chapter of the National Hemophilia Foundation welcomes the Hemostasis and Thrombosis Center of Nevada, and Genentech as its gold sponsors; Fidelis Specialty Pharmacy, Optum, Grifols, Infucare RX, CVS Specialty Pharmacy, and Las Vegas Party Rentals as its local sponsors. National partners include Takeda and Hemophilia Alliance as presenting partners; BioMarin and Sanofi as community partners; and Ascella Health, Bayer and HEMA Biologics as partners.
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 million 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, Nevada Chapter of NHF 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. The Nevada Chapter of NHF 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.
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