Virtual ‘Unite for Bleeding Disorders Walk’ Set for Oct. 10 in US

Virtual ‘Unite for Bleeding Disorders Walk’ Set for Oct. 10 in US
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The National Hemophilia Foundation (NHF) is inviting the country’s bleeding disorder community and others to participate in a first virtual Unite for Bleeding Disorders Walk on Oct. 10.

The walk provides a means to raise funds for and awareness of disorders such as hemophilia. Due to the ongoing COVID-19 pandemic, the event was sent from the streets to the screen, but people across the U.S. can continue to raise money to support disorder research, advocacy, and education.

Rather than joining a crowd to walk along a predefined route, participants in a virtual walk choose their own course, starting time, and team, should they walk with company. Fundraising takes place largely online and the NHF provides advice on how to get started.

“Since its inception and through 2019, the Unite for Bleeding Disorders Walk program has raised over $21 million and engaged over 126,000 participants,” Leonard Valentino, MD, CEO of the NHF, said in a thank-you video posted to the event website.

“One hundred percent of the money that is raised stays locally, to support the local community,” he added.

Potential participants are invited to find out what their local chapter is hosting, and the NHF is also organizing special events.

The Northern California chapter, for instance, aims to raise $120,000. In addition to supporting research and education, funds will go toward community programs such as emergency financial assistance for families in need during the pandemic and Camp Hemotion, a medically supervised camp for children and siblings affected by bleeding disorders.

Local chapters are planning events, besides the walk, in over 40 cities across the country.

The New York City chapter, which hosted its first NYC Unite for Bleeding Disorders Walk 15 years ago, will include celebrity appearances, a virtual photo booth, and a magic show.

In turn, the Midwest Hemophilia Association plans a one-hour event before the walk starts, featuring presentations from sponsors, individual shout outs, a pinwheel ceremony, and an award ceremony recognizing individual, team, and industry fundraisers. Participants are asked to share photos on the association’s social media sites.

A complete list of local chapter websites can be found here.

Takeda is the national presenting sponsor for the Unite for Bleeding Disorders Walk, and official sponsors are BayerGrifols, Optum, and Sanofi Genzyme. The specialty pharmacy Accredo is a walk partner.

The Centers for Disease Control and Prevention (CDC) estimates that some 33,000 males have hemophilia in the U.S. (the disorder is much rarer among women). The CDC further estimate that more than 14,600 men, women, and children were treated for von Willibrand disease, another bleeding disorder, between 2012 and 2016.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
Total Posts: 46

José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.

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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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