The episode of Let's Talk MND is about the best practice of research collaboration between Dr Marnie Graco and people with MND which is crucial for advancing understanding and care. This approach not only improves the relevance of research programs but also fosters a sense of empowerment and involvement among those directly affected by MND. It's a powerful way to inspire others and drive meaningful progress in the field.

Featuring Natalie Parke and Phil Camden

Maxine Gee was diagnosed in August of 2023 with Bulbar Onset MND which means she is unable to talk.

Maxine is living her life with MND to the MAX

Here she and one of her tribe Snez tell us her story

 

Pat Cunningham

Pat is one of the 3 Amegos' of Neale Daniher, Dr Ian Davis and himself who started Fight MND.  Pat's wife Ange had MND and lost her battle with the beast in 2016, leaving behind Pat & their two small daughters

Pat has spearheaded the project management of the Fight MNDs largest public fundraiser – Big Freeze at the G, and also leads the FightMND Care Committee in overseeing the Care portfolio and grant application/award processes.

Pat is a great bloke and here with us today.

Matt Nable is famous, he is an Australian film and television actor, writer, director and acclaimed author. He works non stop in Australia and overseas alongside the likes of Robert DiNero and Clive Owens and Vindisel. In his latest film Infusion, on Stan, he wrote directed and starred with Sam Worthington.

He is former professional rugby league player. sports commentator he is also known as the voice of the NRL. 

But we are not going to discuss any of his career.

Matt's beloved brother Aaron died in March this year of MND, Matt's pain is raw.

Phil Smith was diagnosed with MND over 6 years ago.

Phil has the most wonderful outlook on life and he is living it to the fullest - including playing golf.......how does he do this?

Clare Sullivan is the CEO of Motor Neurone Disease Australia.

Clare asked if she could interview me - thats a twist!.

I said yes, and this is my story with MND

 

Dr Bec Sheean is the Director, Cure Research and Programs at Fight MND

Bec has been with Fight MND for 8 years

Bec discusses her career, he beloved dog Ruth and the amazing impact Fight MND has on the life of people with MND.

Bec is an especially gorgeous human.

 

David Neitz or Neita, was the longest-serving captain in the history of the Melbourne Football Club and the first Melbourne player to achieve the 300-game milestone. 

Which basically means in Melbourne he is a hero.

However, David is a co-founder of Brewmanity which is more than just a brewery; it's a Melbourne beer brand committed to doing good. Since its inception in 2015, Brewmanity has been dedicated to raising funds for Fight MND (Motor Neurone Disease) in support of David's friend Neale Daniher, with contributions to date nearing $970,000.

Excitingly for David  Brewmanity, has just opened  Melbourne's first rooftop brewery bar in South Melbourne. Brewmanity is more than just a brewery; it's a Melbourne beer brand committed to doing good.

David is such a champion of Fight MND, raising funds and awareness about MND.

If you want to come to Brewmanity's fundraiser on 31st May here is the link to buy tickets. https://www.eventbrite.com.au/e/big-freeze-brewmanity-brewery-tickets-896772720347?aff=oddtdtcreator

 

Emeritus Professor Surindar Cheema PhD

 Honours and PhD degrees. Since 1978, Professor Cheema has held research and teaching appointments at Monash University, The University of North Carolina at Chapel Hill USA, The University of Melbourne, The Walter and Eliza Hall Institute of Medical Research and The Howard

Florey Institute. He spent approximately 10 years engaged in MND research as well as a volunteer with MND Victoria.

 He played a major role in bringing into Australia the mouse and rat models of MND i.e. transgenic G93A SOD1. 

Also, he initiated the setting up of the human MND tissue bank. He served on the MNDAV council for several years. He was emeritus Professor at Monash Universitybefore full retirement.

Watch his YouTube here 

https://www.youtube.com/@biglapformnd-ci9jt?si=VspjwfvCgrcJczHg

You can donate here 

https://www.mnd.org.au/my-fundraising/2180/big-lap-4-mnd

 

Bec Daniher was living her best life.

Bec represented Victoria in both junior and senior level rowing, winning two Queen's Cups during her time. She had the honour of being selected to represent Australia culminating in the World Championships in 2013 in South Korea. 

Bec studied business and pursued a career in accountancy, working in the field of finance as an accountant for several years.

Then, in 2013 the Daniher family lives were turned upside down when her father Neale was diagnosed with MND.

Bec's dad is Neale Daniher AO a former Australian rules footballer who played with the Essendon Football Club.  He was later the coach of the Melbourne Football Club, and held coaching positions with Essendon, Fremantle and West Coast.

However, the Danihers are not a family to sit around and do nothing.

Bec is here to discuss Fight MND and particularly The Big Freeze, of which she is the Campaign Director, and along with Neale the face of Fight MND.

http://fightmnd.org.au