Mitochondrial disease Blog

What is Mitochondria?

Sat, 17 Sep 2011 15:33:57 GMT

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

Jacks Outback Adventures

Sat, 17 Sep 2011 15:14:41 GMT

Visit Jacks outback Australian disabled adventures, we try to provide Jack with as many holiday and adventure opportunities as possible

Early Intervention Programs

Sat, 17 Sep 2011 14:58:31 GMT

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

mitochondrial ebooks

Sat, 17 Sep 2011 14:50:28 GMT

mitochondrial ebooks - information resources that we found useful

Mitochondria Books

Sat, 17 Sep 2011 14:44:31 GMT

Easy to read parent friendly books on Mitochondria and medical references

Mitochondrial-disease-cure

Sat, 17 Sep 2011 14:39:58 GMT

Help find a cure to Mitochondrial Disease

Mum's Page

Sat, 17 Sep 2011 14:34:46 GMT

Mums Pages

Dads page

Sat, 17 Sep 2011 14:31:18 GMT

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

The van

Sat, 17 Sep 2011 13:53:58 GMT

It been a long time coming but we have now purchased a passenger van. A few years back Jack transitioned from a stroller to a wheelchair and at that time Charmaine gave up her sexy little car for a 4WD to accommodate Jacks wheelchair and equipment. We do enjoy our 4WD trips away so the idea of a van has not been easy. Even Jack got really upset when sitting in the van while we were trying to work out if it was the correct vehicle for us. We had to tell Jack we would always have another 4WD for his adventures and fishing trips. Its amazing what Jack picks ups. He relaxed after knowing he would always have a 4WD for his adventures.

Jacks Everyday Hero

Wed, 14 Sep 2011 15:21:04 GMT

We would like to thank everybody for their very generous donations. Jack is well on his way to reaching his goal for this year. In addition to raising money for researching for a cure we are also trying to raise awareness of Mitochondrial Disease. Sadly we know there are still people in our community that are trying to establish what illness their child has. We hope that this fund raising event also raises knowledge within our communities of mitochondrial disease, I know there is a smart young person who will find the cure and maybe you will be the person who provides that inspiration to them.

Getting Better

Wed, 14 Sep 2011 15:21:04 GMT

Jack is now back at school and starting to feel better. The antibiotics are starting to be effective, his bladder infection appears to be passing and my little warrior has nearly shaken his chest infection. The current complication from his recent illness is constipation and so we now have to give Jack addition laxatives to help him pass this more easily, It is hard to see Jack suffering and to know there is very little we can do but give him a big hug and try to make him feel better, it really saps the energy from him. But with all this illness he still has good spirits and his beautiful big smile. Jack has also had quite a few medical appointments this week at the Perth children's hospital. The intent of these appointments to look at his overall long term health, and the focus respiratory, and cardiac systems. We can only hope by the end of this week Jack will have fully recovered from his current bout of illness.

Jack Photos

Thu, 08 Sep 2011 07:34:15 GMT

Photo's of Jack White

Noah and Harrison Jack Mito Mates

Wed, 07 Sep 2011 14:57:48 GMT

Tamara and Jason Robins with their twin boys Noah and Harrison. Noah has Leigh's disease also. We felt very alone when we first found out Jack had a Mitochondrial Disease but sadly there a many little nippers also searching for a cure. Noah and Harrison who are a bundle of fun also go to the Carson Street School and attend the Conductive Education Program, the school is in Victoria Park, Western Australia. Thanks from Team Jack

Finding that cure

Wed, 07 Sep 2011 14:57:48 GMT

Today Charmaine and Jack conducted an interview with Esse Deves a reporter with channel 10 in Perth Western Australia. The interview was conducted to gain a parents view of the important work conducted By Doctor David Thorburn and the other Mitochonrial researchers in Australia into establishing which elements within our DNA effect mitochondria. This research is made possible by very generous donation that made it possible to purchase the DNA sequencing machinery. It also helps highlight the importance of Stay in Bed DAY on 25 September, raising money for this researching into finding a cure. We will post the video or the link when it becomes available. We thank Esse and Channel 10 for highlighting the important work our Australian researcher are doing towards find a cure for Jack and the other. This cure is only around the corner. A cure will give Jack and the other kids a chance to climb tall mountains and breath crisp cold mountain air, or stand on the deck of a yacht as it races through wild southern seas or Maybe just to kick a footy with their dad. Thanks from team Jack

It's that time of year again

Sat, 20 Aug 2011 05:48:12 GMT

The great bed push coming soon Jacks fundraising http://www.everydayhero.com.au/team_jack_5

World Stay in Bed Day

Sat, 20 Aug 2011 04:15:44 GMT

Its Saturday a beautiful sunny day here in Perth Australia, we had planned to take Jack for a walk along the Coast or maybe play in the sand at Cott. As it turns out he is just to exhausted he was on Bypap (Ventilator) with 02 all night but after having his medicines and a mouthful of breakfast his now back to bed and again on Bypap. Its been a big week for Jack and he has been quite healthy, had a ball at school with his mates and the incredible teachers at the Carson Street school so it's little wonder his quite tired. This is most likely the reason the AMDF has called our fund raising day stay in bed day. It's simple my little warrior needs a lot more rest than most 6 year olds. If you can, please support Team Jack and the other kids by supporting Stay in bed day. Last year we raised a significant amount of money that went towards equipment and research. Checkout the AMDF website our board is made up of Australias leading experts in Mitochondrial research and parents of kids with Mito Disease to drive them with a big whip to find a cure. Time is our enemy, we just don'd have enough of it. Jacks Dad

Mitochondria (Leighs) a Complex Disease

Sat, 20 Aug 2011 04:15:44 GMT

Its not just our little warriors that are being attacked by their own Mitochonria. Many Adults with no previous symptoms are also taken. Katrinas story I am a survivor of adult onset Leigh's disease. My illness came on due to a pregnancy over 15 years ago, and though I have had to undergo a tubal ligation, I have lived a fairly tranquil and symptom-free life since. My heart goes out to anyone who is fighting this horrible illness. My younger brother also had Leigh's, his symptoms began in childhood, but he was diagnosed right before he passed at age 16. I think of him every day, and wonder why it had to happen. I guess that is never going to be something I will ever have an answer for. God bless him, and all of you, for being so brave and sharing your stories so openly. Katrina This is another example of just how bloody frustrating and complex this disease is.

Jacks snow adventure

Tue, 09 Aug 2011 13:50:27 GMT

We recently took JACK to Victoria to visit nana and pa and also to see snow for the first time. A short video of Jacks adventure.

Visit more Australian outback adventures

Tue, 09 Aug 2011 13:50:27 GMT

Disabled friendly outback adventures ad travel locations within Australia.

Money Raised Online So Far $143,379.54 AUD

Mon, 30 Aug 2010 22:00:25 GMT

The AMDF fund raising total so far $143,379.54 AUD, the combined efforts of the mito crew and you our support team. Without your support we would not have got this far. Here at team Jack we thank you and hope you continue to support us in finding a cure, it may not happen tomorrow but we have set a goal of finding a cure by 26 Sept 2015. Our goal is to see Jack kick a footy and climb to the top of a mountain just because he can.

Jack Stay in bed day

Mon, 30 Aug 2010 22:00:25 GMT

Jack had a late start and big sleep in on the day and woke at about 9:30am but with morning medication due by 8:00 we needed to to get him up and go thru our morning ritual, medications following by breakfast but we all enjoyed our sleep in. Jack decided he wanted to visit the lions so we finished breakfast headed off to the Perth Zoo. It was a beautiful day enjoyed by all. Jack did find his Lions and really enjoyed the elephants. We hope you had a great stay in bed day Best Regards Team Jack

Jacks fund raising

Sun, 25 Jul 2010 15:56:56 GMT

Yes we continue to be blown away by the genorisity of everybody supporting Jack in fundraising for Mitochondrial research. We aimed for $10,000 and we are now at $10,840.00. We are now trying to reach a new goal of $20,000.00 Thank you

Nana's cake stand

Tue, 06 Jul 2010 01:20:24 GMT

Nana working hard to raise money for Jack fund raising.

You are incredible - Thank you

Tue, 06 Jul 2010 01:20:24 GMT

Thank you for all your support.

WOW $7690.00 and it's only the 1st of July

Fri, 02 Jul 2010 14:26:55 GMT

We are truely blown away by the incredible support in our quest to find and fund a cure to Mitochondrial Disease Team Jack

Its Jacks Footy Team

Fri, 02 Jul 2010 13:27:01 GMT

The Hawk's are playing again tonight and Jack and Elmo have worked up a thirst. They're keen to watch Hawthorn win another hard game. Jack is an honorary member of the Hawks football club and his footy jumper was signed by Shane Crawford and Spider Everett!! Compliments of John Quinn who roped Jack in as a Hawks member whilst still in the pram, recruiting them young.

Mitochondrial Information Day

Tue, 29 Jun 2010 00:08:32 GMT

29 June 2010 Dear Friends You, together with your family & friends, are invited to attend the Mitochondrial Information Day on Thursday 29th July 2010 in the auditorium of the Kolling Institute, Royal North Shore Hospital, St Leonards, from 9am 1pm. Key speakers on the day will be Dr Kimberley Tan, Neuro-Ophthalmologist, Royal North Shore Hospital, Dispelling the myths: mitochondrial disease & the eye, together with Professor Carolyn Sue discussing the current state of research into mitochondrial disease. It is only by research that treatments and possible cures will ever be determined for this disease that robs your energy. The Australian Mitochondrial Disease Foundations (www.amdf.org.au) hard working directors will be able to update you on the progress of the organization, and tell you about this years Stay in Bed Day on Sunday 22nd August. Your interest, support and/or participation in this event will be welcome and appreciated to assist future research, education and support for those affected by mitochondrial disease. If you are unable to attend Mito Day for the info, then please check the website www.stayinbedday.org.au to register as a fundraising hero.

Jacks fund raising

Tue, 29 Jun 2010 00:06:01 GMT

Jack's off to school today after spending three weeks at home with the flu, getting stronger everyday. Jack and his parents would like to thank everybody for your great support for his stay in bed day.

Cupcakes-brownies-muffins-treats

Sun, 13 Jun 2010 12:45:42 GMT

Jacks favourite Cupcakes brownies muffins and treats made by mum and nana

Jacks favourite cupcake

Sun, 13 Jun 2010 12:33:41 GMT

Jack loves mums (Chocolate Cupcake)Please enjoy this recipe, you can also find more recipes on the link provided But for now enjoy a yummy easy to make chocolate buttermilk cupcake helping to feed energy to those little Mitochondria working so hard. Ingredients: 3/4 cup Unsweetened Cocoa Powder 1-1/2 cups Flour 1-1/2 cups Sugar 1-1/2 teaspoon Baking Soda 3/4 teaspoon Baking Powder 3/4 teaspoon Salt 2 Large Eggs 3/4 cup Warm Water 3/4 cup Buttermilk 3 tablespoons Safflower Oil 1 teaspoon Vanilla Extract Preparation: Preparation, this is the key to creating fabulous tasty cupcakes. 1. Preheat the oven to 350 F. 2. Line standard muffin tins with paper liners. 3. In a large bowl, sift the cocoa powder, flour, sugar, baking soda, baking powder, and the salt. 4. Add the eggs, warm water, buttermilk, oil, and vanilla. 5. Stir until the mixture is smooth. 6. Divide the batter among the muffin cups. 7. Fill each tin 2/3 full. 8. Bake until the tops spring back when touched which takes approximately 20 minutes. 9. Transfer the cupcakes to wire racks. 10. Let cool. 11. The cupcakes will keep, covered, for up to two days. I hope you enjoy these chocolate cupcakes

Website Links

Fri, 11 Jun 2010 14:23:55 GMT

website links lists mitochondrial websites that we have found useful

Jacks goal for 22 August 2010

Tue, 08 Jun 2010 16:36:02 GMT

Jack intends to raise $10,000 for the AMDF stay in bed day. The Australian foundation funding researching to cure Mitochondrial Disease. Jack line in the sand. We will cure this disease by 26 September 2010 so that he can learn to play football and run wild with his mates

White Family Vision and Mission Statement

Tue, 08 Jun 2010 15:47:09 GMT

Our promise to you is to provide information to other parents looking for answers

Donate

Sun, 30 May 2010 12:59:27 GMT

Donate to improve the lives of children

Mitochondrial Disorder; Information for Parents

Sun, 30 May 2010 12:14:34 GMT

To provide parents with information, support and access to resources to help them understand Mitochondrial Disease. Our aim is to find a treatment and CURE for our childs mitochondrial disorder.

broken Links

Tue, 22 Apr 2008 15:13:41 GMT

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

mitochondrial research

Tue, 22 Apr 2008 15:13:41 GMT

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...

facebook

Tue, 22 Apr 2008 15:13:41 GMT

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.

My new projects

Wed, 16 Apr 2008 16:22:08 GMT

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

Jack other blog

Wed, 16 Apr 2008 00:59:22 GMT

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

face book

Wed, 16 Apr 2008 00:59:22 GMT

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

Paces CEO - food for thought

Mon, 14 Apr 2008 15:36:04 GMT

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

It's been a while

Mon, 14 Apr 2008 15:36:04 GMT

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

Mito Cure

Tue, 19 Feb 2008 13:20:30 GMT

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, Kellys 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

Conductive Ed @ Carson street needs "YOU"

Sat, 09 Feb 2008 14:48:06 GMT

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

A break thru at last

Sat, 09 Feb 2008 14:48:06 GMT

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

Mitochondrial information

Wed, 30 Jan 2008 15:26:04 GMT

Two families discuss how Mitochondrial disorders affect them

National Science Foundation

Mon, 28 Jan 2008 14:46:29 GMT

Mitochondria Explained - worth a look Mitochondria are small compartments partitioned by membranes and found exclusively in complex cells.

Mito Research into Cancer

Mon, 28 Jan 2008 14:46:29 GMT

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.

Rosalind Gardner - great read

Mon, 28 Jan 2008 14:46:29 GMT

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

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