"Wainaina,
Can you post the outcome when ur son tries Idebenone. I would like to know if it has the same effect it did on Joshua.Thank you"
Eliane Khoury's Discussions
Stem Cell Therapy
Started this discussion. Last reply by Tulika Aug 20, 2011. 8 Replies 0 Favorites
L-Glutamine - COQ10 and Creatine
Started this discussion. Last reply by Bill Cain Nov 10, 2009. 9 Replies 0 Favorites
Froth at mouth while asleep
Started this discussion. Last reply by Kelvinsmom - Michelle Sep 17, 2008. 2 Replies 0 Favorites
Eliane Khoury's Page
Latest Activity
"Having spent crazy amounts of time on google I have modified my search string on google to exclude anything that says mice or mouse
My search string is "duchenne stem cell -mouse -mice"
"
"Elaine,
If you are searching for progress on stem-cell front (although still never as quickly as we would like), you should follow the San Raffaele Scientific Institute in Milan Italy. This is real science, in pre-clinical…"
"Thank you for your reply. All we could do is pray that our miracle will come one day"
"Medra is a scam. This is one of many credible reports about them
http://www.topix.com/forum/tech/stem-cell-research/TDTCPPMMM1KDGIHR7
I too am frustrated at the agonizing pace of science, I fully understand why you would look this way. But…"
"Curtis, thanks for interacting here. What we understood from the PPMD investigation report that was posted here was that Ryan does not have DMD, but some other neuromuscular disease. Can you share your thoughts on that? Thanks."
"I have been quite on the PPMD blogs over the past year, in order to work with Pat and her staff to investigate Ryan's stem cell treatments and the successes that he has achieved. It is impossible for someone with Duchenne to get stronger, but…"
Profile Information
- About me:
- A mother with three children, two girls and a boy
- About my family:
- My nephewwas diagnosed with Duchenne 2 years ago
- Name(s) of child(ren)/individual(s) with Duchenne:
- Emilio
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City:
- Sydney
Comment Wall (3 comments)
- At 4:42am 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 3:34am on January 16, 2009,
Michelle Bignold said…
- Hi Elaine
I live on the Northern Beaches of Sydney and am organising a walk-a-thon to help raise money for MD Research. It will be a great family day out. If you are interested please let me know and I can send you a sponsorship form.
Walk for MD
April 5, 2009 at 10:30am – Manly Beach, Sydney TAKING THE STEPS TO FIND A CURE When: Sunday 5th April, 2009 Where: Manly Beach, Sydney Start: Queenscliff Surf Life Saving Club @ 10:30am Return to Surf Life Saving Club for Sausage Sizzle Route...
Michelle
- At 12:29pm on September 10, 2008,
Tonya said…
- Hi Elaine,
My son Gavin is only 2 1/2 and at this point he is doing very well. He can run and climb and go up and down stairs. We see Dr. Wong in Cincinnati and she recommends CoQ10 and Vitamin D3. The dosage is based on how low his levels are. Apparently most boys with DMD are low in CoQ10 and Vitamin D3. CoQ10 is good for the heart. I do notice a difference with my son on supplements, he takes 1/2 of a Protandim pill a day as well as 1 pack of Juven. He was constantly getting sick and had a hard time getting over a simple cold. He has only been sick one time since starting the supplements and he got over it in days. We also noticed Gavin seems stronger standing up with ease not using his hands and running with his knees higher. I believe in the supplements myself. I feel with a disease like this if there is anything we can do now that MAY help in the future why not try it. Most doctors are not going to be on board with supplements. Doctors will wait until all the studies have been done, which who knows how long that will take. I would evaluate what others are trying and decide what works for your nephew. We have had many people tell us what they do, but we came up with a regimen that we feel comfortable with and go with that. Here is what we do for Gavin. I did end up talking with Dr. Wong's nutricianist and she told me that we are definately not over doing things. Many parents are giving 2 packets a day, but Gavin is only 2.
CoQ10 - 50mg
Vitamin D3 - 1000 mg
1/2 of a Protandim
1/2 multivitamin
1 packet of Juven with 16 oz of water.
Hope this helps! Tonya :-)
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