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Mobility Devices

Started this discussion. Last reply by Tamara Walters Dec 5, 2011. 6 Replies 0 Favorites

Tarantula venom and DMD

Started this discussion. Last reply by Ginny Ward Mar 6, 2011. 1 Reply 0 Favorites

Genzyme

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Tamara Walters replied to Jonathan's discussion Mobility Devices

"I felt the same way when my son was that age, about protecting him from the knowledge of DMD. However, for our son it made him feel better to know that he had a specific problem. Before he thought he was just slow and not as good as the other kids.…"

Dec 5, 2011

Lisa Groeger replied to Jonathan's discussion Mobility Devices

"It's a difficult situation. I have 2 with DMD who are now teenagers. We didn't use anything at school as schedules were modified for walking long distances during the day. Is your child in Adaptive PE? My kids were in…"

Nov 1, 2011

Jennifer replied to Jonathan's discussion Mobility Devices

"My son in six years old also, and we have just ordered him a wheelchair. He loves having it in school to help with the long distances, and at home we still use a wagon or a special needs stroller. He chose the color of the chair and even…"

Nov 1, 2011

Keith & Jill VE replied to Jonathan's discussion Mobility Devices

"We also have the Special Tomato, since we weren't ready for a clinical stroller or wheelchair (still aren't ready!). He doesn't seem to mind using it at the mall or other long-walking trips (he knows his limits). In fact,…"

Nov 1, 2011

lisa burke replied to Jonathan's discussion Mobility Devices

"This is only a suggestion as i don't have experience of this, but what about a childs scooter (not the mobility type)? You can get electric versions of the 'razor' type that lots of 6 year olds will have - and they can come with a…"

Nov 1, 2011

Liisa Underwood replied to Jonathan's discussion Mobility Devices

"I can only imagine what a huge transition this must feel to face. It sounds important to have help for William. My 6 year old's school campus is very hilly, so we had to have an adaptive chair from the start which was Pre-K. We used…"

Oct 31, 2011

Jonathan posted a discussion

Mobility Devices

My son is now 6 and a half years old. We have been having a bad run this last week. We have a 9 week old baby girl who wont settle, so we are sleep deprived, and on top of that we found out last week that our son, William, has almost stopped growing from the increase in steroids we had to do 6 months ago.Today we were contacted by his school who discussed getting a wheelchair for our son as when they have to go to the ovals for sports, he is getting tired walking down there, and once he is…See More

Oct 31, 2011

6 Comments 0 Favorites

Jonathan replied to Jennifer Collier's discussion 3 Year Old Insomniac - HELP please!!!!!

"We have been told from our specialist that it is common for kids with Duchennes to have abnormal sleeping habits and that medications are sometimes required to help alleviate the problems that it causes - more for the rest of the family than…"

Jul 13, 2011

Profile Information

About me:: I am a scientist running a stat lab. Sounds a lot more glorified than it actually is! I always had an interest in molecular genetics and that sort of thing, so to find myself in this situation is rather ironic. At least I have the knowledge that I can understand a lot of where research is going.
I love to play basketball aswell, although Im struggling to come back from a knee operation I had a year ago. Oh and Im a gamer aswell with my current game being WOW!!

About my family:: We are a crazy family at the best of times. There are 6 of us in it - Anna and myself, then Sam, Alec and William, and our dog shadow.
Sam and Alec are from Anna's previous marriage and William is from the two of us.
Sam and Alec are unaffected while William has a non-sense mutation on exon 23. We found out purely by accident back when William was just about 1. Anna always had a gut feeling that things werent right and she pushed hard for a blood test which found he had DMD (was a lot more complicated but you know what I mean!)

William was a difficult baby and has never slept like other kids. He is very demanding, but is the most beautiful boy in the world! He has such a gentle nature and loooks after all his toys so that they dont get broken. He loves trains and has done for years nowand has a wooden train track aswell as all the Thomas DVD's, and we are currently working on building a big hornby train track. He loves swimming and has done since the moment we took him to a pool, so much so that he is driving us crazy asking us to take him swimming even though it is getting too cold to swim.
Alec is fiercly protective of his younger brother and wants to look after him all the time, while Sam takes great delight in teasing both his younger brothers mercilessly. It means there is a lot of wrestling going on and always a lot of noise. Its almost like the volume knob has been broken at the highest setting!

Name(s) of child(ren)/individual(s) with Duchenne:: William

Age(s) of child(ren)/individual(s) with Duchenne:: 4-6

City and State:: Brisbane

Country:: Australia

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At 10:04am on March 22, 2011, Deb Robins said…: Please edit your bookmark for Duchenne Foundation - Old Parent Project Australia one not working anymore. Change to: www.duchennefoundation.org.au

At 10:23am on December 21, 2010, Ofelia Marin said…

this is what they say about myostating inhibitors...

http://www.treat-nmd.eu/patients/DMD/increasing-muscle-mass/

Challenge:

Myostatin inhibition will lead to expansion of muscle stem cells (satellite cells, see cell transplantation). Due to the continuous muscle damage in Duchenne patients, the number of these muscle cells is reduced and myostatin inhibition may further deplete the pool of muscle stem cells (i.e. the point where no stem cells are left and muscles can no longer be repaired is reached earlier). However, it has not yet been proven that this is indeed the case.

At 9:14pm on April 22, 2010, Julie Gilmore said…: Hi Jonathan,

Nice to meet you although I wish it were under different circumstances.

We are coming to QLD next week (and flying into Brissy) so if you want to come down to the Gold Coast for a BBQ you and your family are most welcome. We actually have another DMD family that is coming over on the 7th May, so if you are free, and would like to catch up please let me know and I will send you all the details :D

At 7:00am on April 11, 2010, Ofelia Marin said…: Yes, you do need to be approved. Let me give you Robin's email, that will speed things up:
robin.sharp@javelinsoft.com

At 8:25am on April 9, 2010, Ofelia Marin said…: Hi Jonathan,

You might be interested joining this forum: http://forum.trialserve.com/forum/index

There is a lot more high level discussion about research, published papers, trials etc.

Ofelia

At 8:35am on December 30, 2009, Deb Robins said…: Go to www.towardsabrighterfuture.org.au for news of our national neuromuscular conference in Sydney, Feb 26-27, 2010. Draft program is online now, including concurrent breakout sessions. Share this update with affected persons and family for whom we have govt monies to offer some assistance to attend if needed.

At 4:41am on February 18, 2009, Sharyn Thompson said…: This is for all Australians affected by DMD. The inaugural "The Tour Duchenne" will start in Sydney on March 7th at 7am and will end in Melbourne on March 16 at around 2.30pm.

The riders will start their journey at The Institute for Neuromuscular Research (INMR), based at The Children’s Hospital at Westmead, then make their way via Wollongong, Batemans Bay, down the picturesque south coast of New South Wales, through country Victoria and then onto Melbourne, where they will finish at the National Muscular Dystrophy Research Centre (NMDRC).   

Our plan is for this to become a huge nationwide event, so we need your support for this initial ride. You can view all the details about the ride and its participants at www.tourduchenne.com.

Please ask everyone you know to support this fantastic cause. Our aim is to raise $1million to go towards finding a cure for this insideous disease. Whilst a cure may be too late for some boys, we can spare future generations from suffering from DMD.

For those people based in Sydney, there is a "Farewell" event at The Cargo Bar on Wednesday, March 4 2009. Admission is $100 and will include food and drink, silent auctions, celebrity host Tom Williams, and guest speakers. There will also be lucky door prizes, and all $100 tickets receive 5 entries into our guessing competition, with some AMAZING prizes. You can see a list of prizes on our website. To buy tickets to this event, please visit the site http://www.mda.org.au/events/tourD/launch.asp.

We need your support, and that of everyone you know. We HAVE to find a cure, we all want our little boys to grow up and be wonderful, happy and healthy adults. We can achieve this by starting here!

Also, if you (or anyone you know) needs to contact me at all, you can reach me on realthomo@hotmail.com or here on PPMD. Any questions at all, I will be able to answer.

At 12:05am on August 19, 2008, Sharyn Thompson said…: JOnathan, I think I just replied to your post on the old PPMD site, the post about schools? Anyway, welcome! This is a fantastic site!