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Jonathan
  • Male
  • Brisbane
  • Australia
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  • Julie Gilmore
  • Ofelia Marin

Jonathan's Discussions

Weight loss

Started this discussion. Last reply by Sampreet Feb 8. 1 Reply

Pamidronate therapy also known as Aredia

Started this discussion. Last reply by Janine Sep 20, 2013. 14 Replies

Mobility Devices

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

 

Jonathan's Page

Latest Activity

Jonathan replied to Joy Narmore's discussion fosamax
"We actually went further than fosamax. Our son broke his tibia/fibia straight across at the ankle from just rolling his ankle on the edge of the pool when he was only 7. We saw an endocrinologist and he had dexa scans to see how oesteoporotic he was…"
Jun 25, 2014
Jonathan replied to Evelyn's discussion Stopping deflazacort
"I usually stay out of these things but I will have to put it out there that it is not nescessarily true that deflazacorte is better than prednisolone. Children will react differently to these steroids and what might work for some doesnt nescessarily…"
Oct 16, 2013
Jonathan replied to Jonathan's discussion Pamidronate therapy also known as Aredia
"Well we just did the 6 monthly repeat Deoxypyridinoline test and the results show that the Zalidronate has worked so far. We wont know how well until we get another DEXA scan which may be in November. On a side note, just after the infusion we…"
Sep 19, 2013
Jonathan replied to Guillermo Rivera's discussion Who benefits from exon skipping?
"Exon skipping can help those with point mutations, however it will depend on which exon it is due to the way the exons fit together aswell as if that exon codes for a critical part of the protein. Also exon skipping is currently only being evaluated…"
Jul 29, 2013
Debbie Wagner replied to Jonathan's discussion Pamidronate therapy also known as Aredia
"My son has been doing Pamidronate Infusions since last July. It's every 3 months for about 4(or more)hours. This July will be our last set of 3 days, then in October, we go to 2 days(still every 3 months) then next April, we will do 1 day and…"
May 30, 2013
Jonathan replied to Jonathan's discussion Pamidronate therapy also known as Aredia
"Just an update! We went ahead with the infusion, which was changed to zalidronate at the last minute. This was because the Zalidronate was stronger and would last for 6 months meaning he wouldnt require another infusion until then. It also meant…"
May 27, 2013
PAULA KERR replied to Jonathan's discussion Pamidronate therapy also known as Aredia
"Dear Brian,   I am so very sorry to hear that your son has died. This is such a horrific disease Brian; we had never even heard of it until November. So much work is happening around the world and I just hope and pray that the miracle we all…"
Apr 20, 2013
Brian Denger replied to Jonathan's discussion Pamidronate therapy also known as Aredia
"Dear Paula,  I am truly sorry learning your three sons have DMD.  My two sons were affected and we recently lost my older son at age 20.  My younger son is 18 and still strong.  Please urge your clinic/physicians to take a…"
Apr 20, 2013

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:
Brisbane

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Comment Wall (10 comments)

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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!
At 1:10pm on August 17, 2008, Kari said…
Did you know there is a group called Aussies and Dad's Only you might want to join?
At 1:04pm on August 17, 2008, Kari said…
Welcome Jonathan to PPMD Community.
 
 
 

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