Thursday, 26 February 2015

International Rare Disease Day 2015 -- 28th February --

It's that time of year folks -- again already!

"International-Rare-Disease-Day-2015" / 28th February...

Sean Hepburn Ferrer is the eldest son of the late, beloved Audrey Hepburn, actress and dedicated philanthropist, and Mel Ferrer, actor, film director and producer. Sean Hepburn Ferrer is very well placed to be the Rare Disease Day 2015 Ambassador. He is familiar with the struggles people living with a rare disease and their families face. His mother, Audrey Hepburn, passed away from a rare cancer, Pseudomyxoma adenocarcinoma, a disease that affects only one in a million.

The personal experience of the Rare Disease Day 2015 Ambassador is common to the millions of people with rare diseases, as well as their families and caregivers. With the theme of Rare Disease Day 2015 focusing on Living with a Rare Disease, we are honoured to have the support of Sean Hepburn Ferrer as Rare Disease Day 2015 Ambassador.

It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to pay tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

A quote from Sean Hepburn Ferrer

"...On January 20, 1993, my mother, Audrey Hepburn, passed away from a rare type of cancer – Pseudomyxoma adenocarcinoma. When we found out that the only tentative treatment was a chemotherapy (5 fu leucovorin) available since the 60s, we, her family, truly connected with the fact that this disease was not a priority for Big Pharma. The most precious person we knew could not be saved.

So, when Dawn Green, CEO and founder of the 'Pseudomyxoma Survivor' Charity and herself a one in a million cancer survivor, nominated me to be the ambassador for Rare Disease Day, I knew that, not only did she have this rare cancer but also a rare ability to transform darkness into light and smile in the face of adversity.

'Rare' is a word most often used to convey the same values as  'precious'… unique… valuable. And if one adds up all of us precious beings that suffer from a 'rare' disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, I feel it is quite easy for any of us to relate to 'rarity'… that rarity that comes in those moments when we must truly face life and adversity by ourselves.

When my mother visited Africa for UNICEF she would often say; "we cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…" It is in this spirit that I accepted this invitation..."

..And on a more personal note..!

Hello friends, readers, TM'ers and other 'special-people'.. I'm apologising for my disappearance from this blog in the last 4-months, it's not been deliberate. But, I've been busy with all sorts of activities - from starting a new business venture-(Raisbeck-Enviro-Mechanical-Services) and getting all of the legalities/licenses/website etc., together. As well, I've been spending time exercising with my dog Zeus!

Besides all that - I was involved in a very special event for me, along with my 'old'-band-mates and best-friends, Dave, Greg, Justin and Michael - called "MindMeld" 20th Anniversary gig! We were just one of the pre-eminent 'rock-n-roll' good-time bands, playing the biggest-n-best hits from the eighties and nineties in and around Newcastle's night-life between 1992-1997. We went our separate ways in '97 but remained in touch - even though we lived very far from each other. True friendships never fade... 

Our name 'up-in-lights' outside the "Blackbutt-Hotel"

Held on the 8th November, 2014 and hosted at the 'Blackbutt-Hotel' in Newcastle, New South Wales, Australia. What a fantastic night it was too! The pub was packed-out!

L-R / Justin-[Keyboards/Vocals], Michael-[Guitars/Vocals], Greg-[Lead-Vocals], Dave-[Drums/Percussion]

With 2x "30-year High-School-Reunions", and all of our closest friends and cohorts. We played a bunch of hits from the 80's-90's and the punters loved it...

L-R / Greg-[Lead-Vocals], Dave-[Drums/Percussion], Glendon-(me)-[Bass-Guitars/Vocals]

We spent 6-months practising our 'set-list', individually at home - and we came together at Justin's place for 'live-practise' inside the specially made sound-proof-garage' we called 'VEGAS'-(no-windows/no-clocks)...

L-R /   Justin-[Keyboards/Vocals],   Michael-[Guitars/Vocals],   Dave-[Drums/Percussion],   Greg-[Lead-Vocals],  

I hope you all had a wonderful Christmas / New Year, and I trust that your 'New-Year-Resolution' is on track too. Please feel free to comment, or just drop me a line and say G'day. I'd love to hear from you...

A peaceful waterhole - another beautiful moment in time along lovely 'Cedar-Creek'