Summer is approaching, and so is the opportunity to get outside and float the river. This coming June 4, everyone is invited to the Red Nose River Run, a river float from Caldwell to Ronceverte Island Park benefitting the ALS Foundation.
ALS, or Amyotrophic Lateral Sclerosis, is an always-fatal neurodegenerative disease in which a person’s brain loses connection with the muscles. People with ALS lose their ability to walk, talk, eat, and eventually breathe.
The Red Nose River Run is named after the late Chally Erb, a performing artist and clown from Renick. Many community members will remember Erb as the clown on stilts who towered over the crowds at festivals around the region.
In addition to being a performer, Erb was an avid kayaker and adventure-seeker. The image that comes to mind for many outdoors enthusiasts is one of him throwing his kayak off the rocks on the New River
Erb was a Vietnam veteran who served his country in the United States Marine Corps. When faced with the diagnosis of ALS, a disease with no cure and little treatment, he braved it with strength, resilience, and determination. He refused to be defined by ALS and continued to find ways to bring smiles to faces as he participated in many community functions as a clown on wheels instead of stilts.
He continued to be an inspiration to others with ALS by attending support groups and posting videos on Facebook of his exercise workouts for those with limited mobility. He was active in an online ALS support forum and kept everyone laughing with his antics and jokes. He established “Unlock the Cure” and raised over $20,000 for Duke University, The Gleason Foundation, and The ALS Association. Finding light in darkness was part of who he was and by helping others he helped himself.
The Red Nose River Run is also being held in honor of Gary Arbaugh, who lost his life to ALS, and in honor of all those who are living with ALS along with their caregivers.
The event is organized by Dan Withrow of Ronceverte, who was dear friends with Erb and Arbaugh, and Deva Wagner, Erb’s daughter.
Wagner says the event has been in the works for years, and she is excited see it finally happen.
“Dan has wanted to have this fundraiser for years. This is his baby. He’s had several friends who have passed away from this disease, including Chally and Gary,” she says.
Wagner says she hopes that the event, a family-friendly river float, will not only raise funds for the ALS foundation, but also awareness about this deadly disease.
“For something that is so rare, there are so many people in our community who are sick and dying of ALS right now,” says Wagner. She adds that those who can’t float can still contribute.
“If you can’t join the float, you can still be involved by making a donation or volunteering for the event,” says Wagner
Presently, there is no cure for ALS. The ALS Association, however, has a bold goal of making ALS a livable disease by the year 2030 and – ultimately – finding a cure. The ALS Association is the only national nonprofit fighting ALS on every front through research, patient/caregiver services, and advocacy.
“We are proud to partner with The ALS Association to fight this disease and we are looking to our community for help,” says Wagner.
The float will begin at the boat launch at Caldwell between 11 a.m. and 12 p.m. Floaters can expect about 2.5 hours of paddle time. The float culminates at Island Park, where there will be food trucks featuring Big Draft Brewing and When Pigs Fly barbecue and live music from Dark Matters.
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