Mitochondrial Blog

This blog details recent news in mitochondrial research for those people hungry for new development as we are. We research new mitochondrial treatments and procedures and try track their progress. We keep our eyes and ears open to new mitochonrial vitamins and medications that work, and we are always looking for new mitochonrial specialists around Australia and the world, there is a cure just waiting to be discovered please be part of the team looking for that cure.

May 13, 2008, Mitochondrial Disorder Information - for Parents

To provide parents with information and resources to diagnosis, gain treatment and find researchers that will find a cure for your childs mitochondrial disorder, to provide support finding equipment

May 13, 2008, Jack White

Jack White my son the inspiration for this web site

May 7, 2008, Donate

Donate to improve the lives of children

Apr 22, 2008, broken Links

I'm currently working thru the site to fix all links that are not operating correctly.

Trevor

Apr 22, 2008, mitochondrial research

An interesting audio clip detailing advances in mitochondrial research.

Dr. Moira Gunn speaks with Dr. Gerard Davis, the CEO of Catapult Genetics, who talks about genetics testing in the cattle industry, and Australia's Dr. Paul Fisher talks about mitochondrial diseases and the research he is undertaking to meet the challenge.

http://itc.conversationsnetwork.org/shows/detail3296.html

mitomate your eyes and ears down under, but hey don't be shy if your know some good news facts please post them on my wall.

white walls are boring - mitomate

IT Conversations | Tech Nation | Dr. Gerard Davis and Dr. Paul Fisher http://itc.conversationsnetwor...

Apr 22, 2008, facebook

mitomate now has a profile

If you have a facebook profile please make friends with Jack your mitomate from downunder.

you'll find jack under mito mate

Mitomate and his dad are going to find a cure we'd love you to help us on this journey.

Apr 16, 2008, Website Links

website links lists mitochondrial websites that we have found useful

Apr 16, 2008, My new projects

Charmaine my wife has asked me to work on developing a page for her new website, the page is to be how to help families with the issue of money stress or lack of it. This would be focused on those that have just recieved the news that thier child has a condition which will require significant care.

I'm certainly familiar with the issue as we have lived it. Don't get me wrong we are far from living on the street, in fact we live a reasonable and "normal"? middleclass life.

I do ask myself more regularly than I should what about my dreams and aspirations, the yacht we sold to cover the loss of one income and a raising mortage debt.

I guess the simple answer is the dream of seeing my boy live a normal life exceeds our and my own aspirations. We had some long nights working thru these issues "our family crisis plan" was not a simple tightening of the belt but rather a radical restructing of our lifes to create new opportunities for Jack.

It really boils down to a solid plan that has flexibility to change and a rigourous budget.

Sounds so simple, but when your world is caving in around you and you find it hard to see sunlight making a plan can be difficult.

We took a very military approach and used mentors as sounding boards for that reality check we needed from time to time. Every plan needs several possible courses of actions with all the details written out clearly. Our finial plan and course of action involved use moving states to the other side of Australia for hospital, famiily and work consideration in that order.

I'll be working on this page over the next few days, this will be added to our resource page because it's needed.

You'll be able to visit it on Charmaine new site up soon, it's a site designed by her and Lee to assist families getting the write equipment for thier child in a timely manner, availble soon at: http://www.specialaussies.com/

Regards Trevor

Apr 16, 2008, face book

Jack hs just launched his new Facebook page, name (MITOMATE) the genetics explorer.

Well Jack and I are both new to facebook but what an exciting medium, we found several group pages for mitochondrial sufferers. Spreading the word and looking for a cure.

these new social networks are an incredable global resource.

Trev

Apr 16, 2008, Jack other blog

Jacks other blog, again we are expanding our global search. With the advice and assistance of our good friend and marketing guru Lou Harty jack has another Blog.

Visit Jack wordpress site

Apr 14, 2008, Paces CEO - food for thought

Posted by PacesCEO on March 13, 2008 March 12, 2008

Rambling on about the value of education Walk with me a while down an educational by-way.

When I started teaching in the 1970s, there were still in Sheffield and probably just about in every other city and town, "ESN Schools" - schools for the "educationally sub-normal". What went on there I do not know. I do know that when I came to Sheffield in 1976, I learned (for some reason that escapes me now, I had no personal or professional interest) that Sheffield had a national reputation for the quality of education in its "special schools".

Walk with me know just a little further.

I was reading tonight of a "scientifically rigorous and independent evaluation of the effectiveness of conductive education and to help guide parents, cerebral palsy care providers and policy-makers" in which "Functional and school readiness outcomes are assessed by independent physical therapists and through parental questionnaires. Data from Gross Motor Function Measure, Quality FM, Pediatric Evaluation of Disability Inventory, Manual Ability Classification System, Communication Function Classification System, Devereux Early Childhood Assessment and other qualitative reports will be analyzed using various statistical methods."

What I wanted for each of my own three children as they in turn approached schooling milestones, was a good education, in a good school. What I wanted for my daughter with cerebral palsy and want, now that she is an adult beyond the reach of mainstream educators, is for all children with cerebral palsy, a good education in a good school.

It is now nearly 20 years since I first was introduced to conductive education. Twenty years in which I have yet to find a comparable system and philosophy of education. Without doubt, conductive education needs the exposure to "scientifically rigorous and independent evaluation" of its effectiveness, for the benefit of parents choosing a school for their child and for policy-makers so that they can remove the blinkers of tradition and entrenched practice.

I want a good education. I want good schooling. Let me be very simple. I am not talking about "interventions"; nor "therapy"; I am talking about "education", "schooling" - the same as for my other two children; as my family wished for me; as my Grandmother wished for her children; as I do for all children with cerebral palsy. Can we not talk about 'education', quite simply, for children with cerebral palsy? Can we not devise the necessary research into the effectiveness of conductive education as 'education', where 'education' has the same meaning as it does for other children? Would research, then, into the effectiveness of conductive education - any education - or into "conductive upbringing", be led by a paediatrician however distinguished and honoured, or undertaken by colleagues, from a University Department of Epidemiology? Would assessments be undertaken by "independent physical therapists"?

The walk is getting tiring....

Read full post, visit paces blog, time well spent. Trevor

Apr 14, 2008, It's been a while

I'm Afraid I've been busy with work and away so have failed to update this blog as much as I would like.

I intend to spend the next few day fixing the various links on this site that I didn't get quite right.

Trevor

Feb 21, 2008, Mitochondria Books

Easy to read parent friendly books on Mitochondria and medical references

Feb 21, 2008, Mitochondrial Resources

Mitochondrial resources - has many valuable PDF's, downloadable from this site, lists information websites and early intervention schools and equipment providers

Feb 19, 2008, Mums Page

Mums Pages

Feb 19, 2008, Dads page

Dads page information on mitochonria and the road ahead, planning tools and some considerations for the future

Feb 19, 2008, Internet Tools

Internet Tools - lists all the resources you require to build your own website, ebooks, information products

Feb 19, 2008, Mito Cure

I am constantly looking for like minded people driven to find a cure.

I only found this site recently, they will be listed on my links page soon.

The crew at Mito cure get my vote, we need more people creating opportunities for a cure to be found.

The Foundation for a Cure for Mitochondrial Disease, Inc. was founded by Bill and Sandy Cunningham in August of 2000 after their daughter Kelly was diagnosed with a Mitochondrial Disease. Since that time, Kelly’s fight with the disease has ended; she passed away in 2005. Not wanting other parents to experience the same heartache, Bill and Sandy remain committed to finding a cure for Mitochondrial Disease through the work of MitoCure.

MitoCure exists to educate communities about Mitochondrial Disease and to generate financial support for the most promising research for a cure. All operating costs are covered through private contributions and all board members are volunteers. This allows 100 % of all donations to go directly to research efforts around the world.

For more information about MitoCure, please visit there site

Feb 9, 2008, Early Intervention Programs

Early intervention programs can improve your childs chance at a normal life

Feb 9, 2008, A break thru at last

We would like to have more children, but with a high probability of a child having severe Mitochondrial complications we have taken the choice to wait for science to help us.

The breakthru in England may offer us hope for a child free of this horrible disease.

Please read the story regards Trevor

Feb 9, 2008, Conductive Ed @ Carson street needs "YOU"

Why Help:

Watch this video and you'll understand!

I am informed that conductive Education in Western Australia if fighting for its very existance.

The incredible work they do at Carson street school is at risk.

No recognition, No money and an Education Department with no idea.

This schools reduces the burden on Perth schools by teaching children with limitations how to become mainstream students.

Most mainstream schools do not have the teachers with the skills, knowledge or some cases the interest in caring for our children, the silent minority with a disablility.

We can spend billions in Western Australia building a new football oval and Museum for the Arts.

But it would seem that small children with disabilities don't rate even a mention and certainly not a small portion of the Governments billions budget surplus.

A government that I'm told is made up of members from the people and for the people. If this is the working man's labour party. They seem to be forgeting a very big portion of the state who are working very hard with so very little.

More to follow soon. Trevor

Jan 31, 2008, mitochondrial ebooks

mitochondrial ebooks - information resources that we found useful

Jan 30, 2008, Mitochondrial information

Two families discuss how Mitochondrial disorders affect them

Jan 30, 2008, What is Mitochondria?

What is Mitochondria explains how Mitochondria form part of the cell responsible for energy production

Jan 28, 2008, Dads Against Disease

Dads against disease, funding research to find a cure

Jan 28, 2008, Mito Research into Cancer

Dr. Singh is one of the leaders in the field of mitochondria research and medicine.He is Professor of Oncology at Roswell Park Cancer Institute, the first cancer research, treatment and education center established in the United States. Prior to joining Roswell Park Cancer Institute, he was an Assistant Professor of Oncology and Environmental Health at Johns Hopkins School of Medicine. He is an expert in mitochondrial genetics and has more than 20 years of research experience.

Jan 28, 2008, National Science Foundation

Mitochondria Explained - worth a look

Mitochondria are small compartments partitioned by membranes and found exclusively in complex cells.

Jan 28, 2008, Rosalind Gardner - great read

I just finished reading this book about making money on the web, if your looking for passive income from the net to help support your family and pay the bills read this book its worth it. Regards Trevor

Read the amazing true story of how one woman, with no previous business experience, earned 436,797+ in 2002 and now earns MUCH MORE than that ... just by selling other people's stuff online!