2020 Postcard from Palm Springs
Highlights from the 2020 CHDI HD Therapeutics Conference are now here! This year’s Postcard covers HTT-lowering therapeutics, including an
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2021 NATIONAL VOLUNTEER WEEK – PROFILES
Ron Culp – Niagara, ON
Ron Culp and his wife, Janice, have been impacted by Huntington disease (HD) for generations. Ron and Janice were always involved with and supportive of her siblings and their families as they lived with the disease and eventually dealt with the early loss of their loved ones. Years later, Janice was diagnosed with a rare late onset form of HD. Throughout her journey, the HD community has become a great resource and network of wonderful people with whom Ron and Janice share their journey. It also became very apparent to Ron and Janice how important volunteers and fundraising are in finding better treatments and hopefully a cure.
A few years ago Ron decided to do more. He joined RaceHD, raised money, trained for, and completed a marathon. He was very moved by the experience, making good friends with the Niagara chapter members and working with them since to raise money for HD. When COVID cancelled the Niagara International Marathon last year, Ron found a way to safely host a small 10km event: the HD Lake-to-Lake challenge.
This year Ron presented the idea of an auction to the Niagara chapter and together they are in the midst of organizing a Facebook event for the end of April, which is sure to be a success. Although Ron is in the early years of his volunteering journey, he will no doubt continue to volunteer and raise money for HD for many years to come. Ron and Janice remain excited and enthusiastic about the auction and the Lake- to-Lake Challenge will happen again this year. They find happiness and positivity in their contributions to finding a cure for HD and truly an inspiration to us all!