We asked some of our EB Cross Country Adventure Ride 2013 Team to tell us their stories in their own words, so you can get to know the people who were riding or driving across Queensland to raise donations and awareness for DEBRA’s National EB Nurse Program.  We love them and we just know you will too!

Riders

John BaconJohn Bacon – Rider & DEBRA Representative

Age: 54

I was born in: Queensland

I’m currently living in: Sydney & Hunter Valley, with my wife Lyndall (but we are 100% Queenslanders!)

My Occupation: My wife and I run a specialist pharmaceutical company called Link Healthcare

Involvement with DEBRA: We have both been involved with DEBRA since 2006. Originally it was through helping with fundraising and mentoring but now I am Chairman of the new DEBRA Australia Ltd Board. Being such a small volunteer based charity I feel it is a privilege to have the opportunity to meet with families living with EB and helping DEBRA to improve EB Services within Australia.

Most interesting person I’ve met: Everyone you meet in life is really interesting. Everyone has their stories, glories and struggles. I’ve never met so many fantastic people as I did on the last DEBRA ride. Whether it’s the riders, the volunteers, the people living with EB, or the many incredible and generous people we met along the way. Just an amazing experience. I can’t wait to get out there again…..particularly starting on our old stamping ground of the Sunny Coast.

Bikes that I currently own: Last ride, I swapped my 250 dirt bike for a plush BMW800. This time I’m shedding 60kg of metal for a good old DR650. I was just so impressed by the DR’s some of the guys rode last year and I really don’t mind swapping a bit of comfort for a lighter ride.

Philosophy on life: “Try to never say no”. It gets me into a fair bit of trouble at times though and this includes agreeing to ride a bike across Australia for DEBRA in 2012.

Luke MurrayLuke Murray – Rider

Age: 35

I was born in: Mt Isa

I’m currently living in: Moranbah

My Occupation: Mechanical Engineer in the coal mines

Most interesting person I’ve met: My wife! After 10 years she still captivates me!

Bike that I currently own: KTM 950 (I just bought it)

Philosophy on life: Just go for it! What ever you want to do.

Involvement with DEBRA: None so far, but I’m looking forward to learning more about the organisation and meeting some families that they help along the ride.

Kevin CarrKevin “Shonky” Carr – Rider

Age: 50 years

I’m currently living: on the Sunshine Coast since 1986

My Occupation: Beer drinker and owner of a property maintenance business

Involvement with DEBRA: Last years ride to Perth with DEBRA and I got to meet some of the families

My Bike: Well ok it’s a mate’s KLX 650 ( kick Start) Yeah!!!!

Philosophy on life: Happy wife happy life… Nah she made me write that…”you get out of life what you put in”

Kevin is our best fundraiser for the EB Cross Country Adventure Ride! So far he has raised $ 3000 – for his entry fee and more than $ 1000 – for the donation to DEBRA! Well done Kev, you are showing everyone how to do this. He is looking forward to his participation in this years event to meet more of the EB families he is working so hard for!

And here is his fundraising secret:

“To me the most important aspect of fundraising is knowing all about the charity you are raising funds for. The more knowledge and understanding you have about DEBRA and EB the more comfortable you will be talking to people about it. Three of my major sponsors are companys that I do regular business with. When I explained to them about the ride and gave them information about DEBRA and EB they jumped at the chance to be involved. I never miss an opportunity in conversation to speak about Debra and the work they are doing with EB sufferers. – Kevin”

Tony BaricTony Baric – Rider

Age: 47

I was born in: Australia

I’m currently living in: Melbourne

My Occupation: Regional Manager JB Hi-Fi Group Pty Ltd

Most interesting person I’ve met: My Wife…LOL!

Bikes that I currently own: Kawasaki KLR 650 for the EB Cross Country ride, also own a KTM 450

What I would wish for if I could wish for anything: Peace & Harmony across The Globe

Officials

Belinda FaganBelinda Fagan – Ride Official – Medic

Age: 32

I was born in: Toowoomba QLD

I’m currently living in: Westbrook, QLD

My Occupation: Registered Nurse with experience in rural nursing, aged care and surgical nursing. I’m currently working at a dermatology clinic.

Most interesting person I’ve met: I don’t have a most interesting person; I have met many interesting people in my life.

Philosophy on life: Life is short; enjoy every day and make the most of every day.

What I would wish for if I could wish for anything: To have a long and happy life with my husband and 2 children.

Oliver KlopfOliver Klopf – Rider, Official & Chef

Age: 48

I was born in: Frankfurt, Germany

I’m currently living in: Bali

My Occupation: I own and manage a Handicraft business, and am also a Certified Butcher & Chef, with a Master Degree in Cooking

Most interesting person I’ve met: Well, lately that would be Rossi, Lorenzo and Pedrosa, who I met in the Pan Pacific Hotel in KL during the Motor GP!

Bikes that I currently own: KTM Supermoto 950, KTM Adventure 640, Kawasaki ER-6N, Kimko 125cc and a KTM Mountain Bike to keep me fit.

Philosophy on life: You only have to do one thing and one thing only and this is to die one day, all the rest is up to you and nobody can force you to do it if you don’t like it!

Simone BairdSimone Baird – Ride Official & DEBRA Representative

My name is Simone Baird and I have a 12 year old daughter Eliza who was born with severe Recessive Dystrophic Epidermolysis Bullosa. Eliza was born in Melbourne and we live in the South East near the Mount Dandenong Rangers with my husband Wayne and my younger daughter Ellie who is 7.

For the past 10 ½ years I have worked with DEBRA Victoria as the state President and most recently for the past 2 ½ years as their co-ordinator whilst volunteering countless hours and time to DEBRA Australia. Sue (from DEBRA Aus) and I work closely on many DEBRA projects, the EB Cross Country Adventure Ride being one of them and we have loads of fun whilst we meet many great people like our EB Cross Country Adventure riders.

My philosophy in life is “have a go, have no regrets” and “Life is all about how you handle plan B”. My husband reckons my philosophy is “don’t wait for tomorrow do it NOW, NOW, NOW! “ smiley

The most interesting people I have met in my life are 3 of the most amazing dedicated health professional I have met over the years since having Eliza.

  • Dylane – a Case Manager who introduced me to support services set up for families and children with disabilities. She showed me which avenues to take, how to deal with politics and red tape within the health system and how to access the best support available in order to provide to quality care for Eliza.
  • Josie – an Occupational Therapist from RCH who taught me everything I know about wound care and bandaging techniques all which I now pass onto other families.
  • And Tom – Eliza’s paediatrician and Infectious Disease doctor who classes Eliza as his most medically challenging patient. A marathon runner and all round great guy with the best bed side manner who has allowed us to be a part of his personal life and cared for Eliza over and beyond his call of duty. He is an advocate of our family, the EB nurse program and DEBRA and will bend over backwards to cater for whatever Eliza’s needs may be.

What I would wish for if I could wish for anything: Ultimately a cure for EB, but until then to provide the best possible care through help from DEBRA and the National EB Nurse Program for individuals and families with EB so they can live a comfortable and fulfilling life.

Sue McKennaSue McKenna – Official

Age: 44

I was born in: The Land of the Long White Cloud

I’m currently living in: Mt Tyson, Qld

My Occupation: Part time DEBRA Australia Coordinator

Involvement with DEBRA: I became involved with DEBRA 14 years ago when my daughter Alex was born with Dominant Dystrophic EB. The health professionals had no idea what was wrong and it was all very daunting, sad and frustrating trying to get answers which took months. When we found out about the DEBRA support group and met other families there was an overwhelming feeling of support and relief that came from meeting other families going through the same thing. Fortunately for our family after finally getting a diagnosis it was confirmed that Alex has a mild type of EB and will lead a relatively normal life, which we are grateful for every day. Having no EB services in 1999 meant no access to dressings nor a visit from an EB Nurse to our home. This support and education at the time would have been invaluable. Today, thank goodness with the support of very generous people, these vital services can now be provided. I became volunteer Secretary of DEBRA QLD in 2003 and then volunteered for the newly formed DEBRA Australia as Secretary from 2005. In 2005 I took on the first employee position as Coordinator and now as the organisation has expanded (and the work load) we have contracted some marketing and admin support. We are now at the stage to employ a second part time employee for the new Family Support Program in 2013 which will bring Simone on board in July.

Most interesting person I’ve met: Too many people to name just one. Mostly people living with EB – it never ceases to amaze me how people living with EB who have constant pain and ongoing various health issues always manage a smile and try to live life to the fullest. They want to live as normal a life as possible and are prepared to take some skin off and get more blisters just trying. Also our lovely mentors who come from all walks of life who volunteer their valuable time to support DEBRA.

What I would wish for if I could wish for anything: No child to suffer from a debilitating condition or live in pain.

Philosophy on life: You’re only here once so make the most of it – if you have a problem, fix it, live with it or leave it.