Ronetta Wackett lost her battle with Creutzfeldt-Jakob Disease (CJD) in October 2021 at age 49.

Her father Ronald Malady also died from the disease at age 43.

Ms Wackett's niece Lori West and other family members and friends are organising a fund-raiser in her honour.

Miss West said the fund-raising walk/run would be held at Lake Pertobe on Saturday, November 12.

"We have been involved with the CJD Support Group Network to help arrange a fundraising event in Warrnambool," Miss West said.

She said there would be activities for all fitness abilities, including run and walk options of three and six kilometres and a motorbike ride.

"The total amount raised will be offered as a research grant in memory of Ronetta Wackett, which will assist the work of CJD research teams at the University of Melbourne towards finding a treatment or cure," Miss West said.

Miss West said CJD was an extremely rare and fatal neurological disease that has no effective treatment.

"It affects about one person in every one million per year worldwide," she said.

"Sadly, Ronetta had inherited the familial CJD gene, which has been in the family for decades."

Miss West said Ms Wackett first displayed symptoms of the disease in July 2021.

"By September she had lost most of her ability to walk and her speech was unintelligible," she said.

"We sadly lost her one week after her 49th birthday in October 2021, comfortably at home and surrounded by loved ones."

Miss West said family and friends wanted to hold a fund-raiser in memory of Ms Wackett.

She said her aunty was dearly missed.

"She made everyone laugh until their stomach hurt," Miss West said.

"She was a huge part of my childhood.

"Most of all, she was the best Mum. Her boys Zac and Jye always came first."

Miss West said it was hoped the event would raise funds and awareness about the disease.

She said it may become a regular event. For more information visit the Run or Ride for Ronnie Facebook page.

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