A MORLEY resident, who has seen six family members diagnosed with motor neurone disease (MND), is racing to find a cure and treatment for her family and all sufferers from inherited forms of the disease.
Assunta Meleca lost four family members to the degenerative disease, including her late father the former City of Bayswater councillor Frank Drago who died in 1999.
Her sister and cousin were also diagnosed with the familial form of MND.
Six months ago, Ms Meleca got cleared from the disease, which led her to quit her long-term job at St Hilda’s Anglican School for Girls, to form her foundation, Racing for MNDi (the ‘i’ stands for inherited forms).
Ms Meleca said the foundation raised more than $80,000 towards the research of Murdoch University’s Centre for Comparative Genomics (CCG), which used her family to investigate treatment and prevention of the disease.
“(My sister) is a year on now; so it has been a year since she was diagnosed and she is starting to lose her ability to eat and she has lost her speech,” she said.
“I got tested and I am clear… I did not want to tell my sister that I was clear because I felt bad but absolute relief because it means that my boys can’t carry through the genetic form either.
“If one of your family members has it, my dad had the gene obviously, it is 50-50 chance of it getting passed on.
“It has been just over 80 years since the first diagnosis and there is no cure and now that I don’t have the gene, I feel like I have got even more energy to keep on going and to find that cure.”
The All Saints College part-time art teacher said the researchers could test people if they had the inherited form and see if their techniques could stop the disease from going further.
“They have been working on my cousin and my sister’s skin cells and growing them to see and start working with them that way,” she said.
“Now, that I don’t have motor neurone gene, they said they are still going to use me and look at the differences.”
Ms Meleca said the foundation’s charity gala event, MNDi Soiree, held at Crown Towers on December 12 would feature an appearance from Formula 1 star Daniel Ricciardo.
“He will be there barracking for us… he knows that every single cent counts in helping people to dig deep,” she said.
“We have got some really amazing auction items that are up for grabs that Daniel has given us that has never been auctioned before and are his.
“We hope to achieve definitely well into the six digits and to be able to give it to the CCG so they can really work pretty much full-time on our cause.”
For more information, visit https://www.facebook.com/racingformndi.