(Ross Street Ice Cream on Facebook)

By Josh Hall | @Vancan19

in honour of late central alberta boy

Downtown Red Deer ice cream sales to benefit Batten Disease organization starting June 8

Jun 8, 2024 | 1:26 PM

Sunday, June 9 is International Batten Disease Awareness Day, and a special fundraiser is happening in downtown Red Deer starting June 8.

Alongside Red Deer City Hall lighting up in teal, with other landmarks across the country, Ross Street Ice Cream will donate $1 from every sale of Super Hero flavour ice cream to Batten Disease Support Research and Advocacy (BDSRA) Canada.

The fundraiser runs through August 8, and it’s all in honour of Daniel Brown, a young boy from central Alberta who died from the little-known disease in 2021.

Batten Disease is a rare genetic neurodegenerative disorder also known as Neuronal Ceroid Lipofuscinosis, and is estimated to affect two to four in every 100,000 kids in the United States.

In 2022, rdnewsNOW interviewed Daniel’s mom Lori, and since, more research has been done in Canada.

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That includes by Dr. Robert Huber of Trent University, who’s worked alongside a team at the Institut national de la recherche scientifique and McGill University, according to the Canadian Institutes of Health Research (CIHR).

According to the research, from one to 35 births for every 500,000 are affected by Batten Disease, with symptoms typically starting between the ages of three and 13.

As the disease worsens, patients become blind, unable to walk, talk or swallow, and are often restricted to a wheelchair or bed.

“There’s currently no cure for the disease, and very few treatments,” explains Dr. Robert Huber, an associate professor in the Department of Biology at Trent University who studies the gene mutations associated with Batten disease, and is quoted on the CIHR website regarding his research.

“And although life expectancy tends to depend on the age when symptoms develop, it is eventually fatal.”

The research of Huber is focused on understanding certain mutations, and how targeted therapies can be developed, or if existing drugs or compounds can be effective.

More on the research of Dr. Huber et al. is on the CIHR website.

Again, if you’re looking for some ice cream for a good cause starting Saturday, June 8, visit Ross Street Ice Cream (4924 50 Street).

You can also learn more at theisaacfoundation.com.

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