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'

Monday, 27 October 2014

Walking is better with a friend..!

Hello readers, friends, and fellow TM'ers!

How many of you have a dog? I believe my walking is 'better' - with a friend..

My companion Zeus - (a 'bull-arab'-cross) - absolutely loves a walk up the Cedar Creek trail..

Dogs have been a part of my family for many years, living their lives with us and giving their love freely. There is so much said about there being a real benefit to your soul - of having a dog, sharing your love with them and in return, experiencing their loyalty. What is it, to 'own' a dog? When in all reality, they can just run away if they choose, right! I believe to have 'companionship' with a dog is like getting a present, every day!

A flowering 'Acacia'-Tree is a member of the Eucalypts - the worlds only flowering trees!

It is a gift, one that is returned to you with interest. For they are caring enough to welcome us into their lives, yet for them, their existence, is totally based on trust. They trust us to feed and care for them, play with them and teach them good manners (mostly), so then they in-return shower us with love and protect us - with their lives. Let me tell you something about our 'puppy' Zeus..!

Zeus loves this little swimming-hole very much!

He's been with us for a little over a year now, and he's a quick learner! I have this 'app'-for my iPhone called 'Runtastic', so every time I go for a walk - usually every day - it makes a verbal-countdown from "10-9-8..." Well, Zeus just flips out and jumps to attention and comes to me like, "..daddy-daddy-lets-go-for-a-walk.." Now, can we???? A-ha-??? He's a real 'mate' for me on our walking adventures.

Cedar Creek delivers these amazingly 'tranquil' settings..

I've taken lots of photos of our local surroundings (a flowering'Acacia' above) and of the Cedar Creek itself, with which our road we live on takes it's name. He has a favourite thing to do when we walk along and that's to walk into the creek at 'special' spots, up to his chest and stand there, he's weird! But, we love him.

Cedar Creek has a 'magical' presence - the trees create an amphitheatre..

Since January this year, when we started walking together, we've walked a total of over 600 kilometers! That's about 370 miles! Not bad for a 48-year old 'broken-man' with "Transverse-Myelitis" - and his dog! You know what - I've felt better in the last three months, than I have for three years and I put it all down to my dog! Because he drives me to do it - I walk with him until we've both had enough, not me, both! ...Thank you Zeus! 

Zeus and me - (..before I lost my glasses!) ..but, that's another story altogether..!

I live with my pain everyday, as you all do too! And, I must be striving to 'pace myself', which is very difficult for me - I'm a 'boom-and-buster'. But, we all must keep looking forward and do what I call.. 'lifing-through-the-pain'..! 

Monday, 14 July 2014

A thank you message..!

Hello readers, supporters, and friends alike! I would like to apologise for being "away" from my blog for these past weeks, sorry - some believe saying sorry is a weakness. Not me. I believe in the opposite! And opposites attract - so more people need to say sorry, in my opinion. The World would be a better place. Now, imagine hearing these three words, together... Sorry - thank you!

Thank you. Two more little words that mean so much, yet are not said enough. We go around living our lives day by day and we hear, read and see other people about, doing the same things. Mostly, we're complaining that we've run out of time to do all the things we want to do.

We know our problems are unique to ourselves - but, I want to personally say thank you to the people closest to me that I've taken for granted and brushed aside, I'm truly grateful. People like you and me have chronic conditions that bring all sorts of symptoms. Symptoms can be treated but the underlying conditions remain - we have too many "bad-days" for our liking.

We still must appreciate the "good-days", when they come. For me, saying thank you to those that care for me is not just being polite. It releases stress! Acceptance of my conditions is a constant battle, that I've had now since 2007. And for me, fighting the natural urge to "push-back" when someone wants to help me get off my chair or hold the car door open for me - is hard when it should be easy.

So, thank you to my current doctors and specialists, for helping me with drugs and therapies to improve my states of body and mind - both are "works-in-progress" of course, right folks! Thank you to the nurses and aids, technicians and staff - who've been there tending to me afterwards, when I've fallen into 'ditches' and down gullies. Scratches, scrapes and cracked bones by me. 

P.s.  Say hi to our Dog, Zeus!

Friday, 2 May 2014

Ask The Experts..! (Live-Podcast 9th May)

Transverse Myelitis Association Members? (..this one's for you guys!)

Hi folks, I hope this message reaches you - feeling as good as you can be! I thought I might "share" this with you all. Especially if you suffer from 'Neuropathic-Pain'. Remember this podcast is in America/Eastern Standard Time, so make a note in your diaries about your "corrected-time"...

View this email in your browser
Join The TMA’s Ask the Expert Podcast Series on Understanding and Managing Neuropathic Pain on May 9th at 1:00 PM Eastern Time. 
Dr. Scott Newsome, DO from The Johns Hopkins Transverse Myelitis Center in Baltimore and Dr. Allen DeSena, MD from The University of Texas Southwestern TM and NMO Center in Dallas will lead the conversation and answer questions from our community.

For more information and to register, click here
What is neuropathic pain?  Why is it different from nociceptive pain?  What causes it?  What are the treatments commonly used? Are there alternative therapies that work? Are there times of the day when pain is worse?

If you have wondered about these questions and many more, please join this podcast to learn and understand more about neuropathic pain after a diagnosis of Transverse Myelitis, Neuromyelitis Optica or Acute Disseminated Encephalomyelitis.

The goal of this education podcast is to learn from the experts who are focused on research and clinical care of these rare neuro-immune disorders - transverse myelitis, ADEM and NMO.

Please submit your questions on this topic that you would like to ask the experts by going to: Google Moderator.

If your question is already submitted by someone else, please vote for it so we know which are the most common questions from our community.

If you don't have a Google account or don't want to create one, please send us an email at to submit any questions you may have. In the subject line, please use "May 9, 2014 Podcast Question".

During the podcast, you can interact with the speakers and the moderator through our TMA Facebook page!

The Transverse Myelitis Association

Dr. Scott Newsome specializes in the care of patients with neuroimmunological and neuroinflammatory disorders of the central nervous system. He has special interest in evaluating and treating patients with multiple sclerosis, transverse myelitis, neuromyelitis optica, and stiff person syndrome. Dr. Newsome works within the division of Neuroimmunology and Neuroinfectious diseases at Johns Hopkins Hospital. He joined the Johns Hopkins Multiple Sclerosis and Transverse Myelitis centers after completing fellowship and he is currently the director of the Johns Hopkins Neurology Outpatient Services and the Neurology Infusion Center.
Dr. Newsome received his medical degree from the New York College of Osteopathic Medicine and graduated with honors.  He then completed his internship in internal medicine and residency in neurology at Albany Medical Center.  During Dr. Newsome’s neurology residency, he was awarded the Golden Apple Outstanding Resident Teaching Award and later was chosen to be chief resident.  He subsequently went on to complete a fellowship in neuroimmunology at The Johns Hopkins Hospital with the support of a Sylvia Lawry Physician Fellowship from the National Multiple Sclerosis Society.

Dr. Newsome’s main research focuses on the use of new quantitative clinical outcome measures and imaging techniques in multiple sclerosis. These tools may improve the precision of disability measurements in multiple sclerosis and other central nervous system disorders. Currently, Dr. Newsome is involved in several clinical trials for multiple sclerosis, transverse myelitis, and neuromyelitis optica. He is also serving as chair for the Consensus Conference Committee of the Consortium of MS Centers and is an advisor for the National Multiple Sclerosis Society Clinical Advisory Committee.

Dr. Allen DeSena is currently TMA James T. Lubin Fellow at University of Texas Southwestern in Dallas pursuing a career in clinical and research on rare neuro-immune diseases.  Dr. DeSena attended medical school at Loyola-Stritch School of Medicine in Maywood, IL, located in the greater Chicago area. From there, he went on to complete a residency in general pediatrics in New Orleans, LA at the Tulane-Ochsner pediatric program, and he earned his board certification in general pediatrics in 2009. Following his general pediatrics training, he moved to Dallas, TX, where he completed a residency in pediatric neurology at UT-Southwestern Medical Center in conjunction with Children’s Medical Center-Dallas and Parkland Memorial Hospital. During that time, his interest in transverse myelitis and other neuroimmunologic disorders blossomed, and he pursued further training in those areas. He is the first pediatric neurology fellow to study the rare spectrum of neuro-immunological disorders, with a particular focus on Transverse Myelitis. Later this summer, Dr. DeSena will be establishing a Neuroimmunology Center at Cincinnati Children’s Hospital and Medical Center in Cincinnati, OH.