NV: If anyone is interested and feeling charitable...

#1
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drncvol

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#1
.....my 24 yr old son Paul, a UNC grad (please forgive him) and a 2nd yr med student at UNC SOM, was diagnosed with adult onset Pompe Disease a couple of years ago. Paul has always been athletic (he could have played college baseball....he beat Alex Woods now of the Braves in the 2008 NC 4A HS Baseball championship which as a dad I would be glad to go into way more detail anytime you would like :) ). Paul is in training to run in a marathon on March 15th to increase awareness of the disease and to raise money for people with the disease. Paul is a huge Vol fan of course and was with me at the UT/Bama games this past fall. If anyone would like to a contribution no matter how small, just follow the link to his story and the way to contribute. If you do donate, please leave a message with something about being a VOL fan. Even if you cannot contribute, if you could share his information (there is a share button) on the site below through Facebook, etc., it would be greatly appreciated. Thanks!

Pompe Marathon | Nonprofits - YouCaring
http://www.youcaring.com/nonprofits/pompe-marathon/291775
 
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#2
#2
Hopefully one day gene therapy will progress to the point where they can treat diseases like this.
 
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#3
#3
Hope and pray they get plenty of donations, and your son to be ok.
 
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#10
#10
From another 24 yr old 2nd year med. student and diehard Vol fan, I wish your son the best. Medical school is hard enough as it is. Your son must be a beast to be able to handle so much. :superman: I bet you're very proud.
 
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#11
#11
MEDVOL said:
From another 24 yr old 2nd year med. student and diehard Vol fan, I wish your son the best. Medical school is hard enough as it is. Your son must be a beast to be able to handle so much. :superman: I bet you're very proud.
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Proud, no doubt about that.
 
#14
#14
May god bless your son and those who are trying to find a cure. As a parent it kills us to see our kids have to go through something like this. But seeing them do something to make others aware and help others, You have got to be one PROUD parent. God has blessed you my friend with a Great Son.
 
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#15
#15
VOLZZ said:
May god bless your son and those who are trying to find a cure. As a parent it kills us to see our kids have to go through something like this. But seeing them do something to make others aware and help others, You have got to be one PROUD parent. God has blessed you my friend with a Great Son.
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Thanks! I am lucky.
 
#16
#16
drncvol said:
Don't worry about that at all. Part of what my son is doing is trying to increase awareness. You reading up on it is a win for Paul.
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It sounds very familiar (due to the myopathy) to what a friend of mine and his brother have. It may be specifically even what they have. I've never asked, all I know is their symptoms are increasing muscle weakness that will eventually leave them in wheelchairs. My buddy is only 24 or so and his thumbs are already almost too weak to use a remote controle.
 
#17
#17
WilliamDuVOL said:
It sounds very familiar (due to the myopathy) to what a friend of mine and his brother have. It may be specifically even what they have. I've never asked, all I know is their symptoms are increasing muscle weakness that will eventually leave them in wheelchairs. My buddy is only 24 or so and his thumbs are already almost too weak to use a remote controle.
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With Pompe (which is one of 12 glycogen storage diseases) there is no cure but there is enzyme replacement therapy. My son every two weeks has ert treatment which hopefully will prevent him from developing muscle problems or at least slow down the progression until a cure can be found. I hope your friends are under good medical care. Sometimes the glycogen storage diseases are misdiagnosed because they are so rare.
 
#18
#18
drncvol said:
With Pompe (which is one of 12 glycogen storage diseases) there is no cure but there is enzyme replacement therapy. My son every two weeks has ert treatment which hopefully will prevent him from developing muscle problems or at least slow down the progression until a cure can be found. I hope your friends are under good medical care. Sometimes the glycogen storage diseases are misdiagnosed because they are so rare.
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Not sure if they are or not, but cheers to there being a cure found, and soon.
 
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