Fundraiser for my son
04-06-2005, 05:48 PM
#1
Fundraiser for my son
I hadn't really checked this in a while, but I edited it today (12/4/07) since I don't want to feel like I am bothering anyone on this great site to send money directly to me. I had good success with the fundraiser we did a couple of years ago, a lot of it through this site. You guys and gals of the .org are great.
Here is some info on what is up with my son:
My son's name is Max and he is almost seven years old now. He was diagnosed just after Christmas 2004 with Duchenne Muscular Dystrophy. It is one of the worst types of MD, with no known cure and most kids that have it living only into their 20s.
We have been actively involved with the MDA and they are a great organization. Many of you know them as "Jerry's Kids" on the Labor Day Telethon every year. The MDA has helped my son with equipment, support and a lot of answered questions to my wife and I. This summer (2008) he will be attending his first summer camp, put together by donations and volunteers. I gave up my time to be on this year's Labor Day Telethon locally. In the future, I will probably be doing more.
If you are so inclined to give money to any charity, this is one I can vouch for and recommend.
If you have any questions or wish to donate, please use the official site:
www.mda.org
If you have any questions or comments directly related to me or my son, please feel free to shoot me a PM or email.
Thanks,
Chris
Here is some info on what is up with my son:
My son's name is Max and he is almost seven years old now. He was diagnosed just after Christmas 2004 with Duchenne Muscular Dystrophy. It is one of the worst types of MD, with no known cure and most kids that have it living only into their 20s.
We have been actively involved with the MDA and they are a great organization. Many of you know them as "Jerry's Kids" on the Labor Day Telethon every year. The MDA has helped my son with equipment, support and a lot of answered questions to my wife and I. This summer (2008) he will be attending his first summer camp, put together by donations and volunteers. I gave up my time to be on this year's Labor Day Telethon locally. In the future, I will probably be doing more.
If you are so inclined to give money to any charity, this is one I can vouch for and recommend.
If you have any questions or wish to donate, please use the official site:
www.mda.org
If you have any questions or comments directly related to me or my son, please feel free to shoot me a PM or email.
Thanks,
Chris
Last edited by Cliff Clavin; 12-04-2007 at 07:18 PM.
04-06-2005, 05:56 PM
#2
I've met Max before (although I think he was tired at the time). He really is a cool, smart kid and it is really unfortunate that Chris and Angie (as with anyone else) have been faced with this challenge. They work really hard and it just doesn't seem fair.
Anywho, Chris, more info on golf? I might be able to sneak away.
Anywho, Chris, more info on golf? I might be able to sneak away.
04-06-2005, 06:02 PM
#3
It will probably be at Wildwood Golf Course north of Portland sometime in 2006. It will definitely be on a Sunday, since that's when the letter carriers don't have to work. I have to get more stuff together with my union, but my dad knows the manager of the course and he said will let me hold it there.
04-06-2005, 08:01 PM
#5
Originally Posted by MrGone
I've met Max before (although I think he was tired at the time). He really is a cool, smart kid and it is really unfortunate that Chris and Angie (as with anyone else) have been faced with this challenge. They work really hard and it just doesn't seem fair.
04-29-2005, 12:18 PM
#7
Thread stuck? Sorry Unc I'm a noob so I hope that doesn't mean I shouldn't reply (please don't ban me for my 4th post) but I wanted to let Red92MaxSe know that I feel for him. I have a 3 year old daughter at home and can't imagine the trials and tribulations involved in caring for a chronically ill child. Anyways I'm in PDX too and thought maybe a show n shine could be held so that local org members could show our support and solidarity to your family's cause and we could do come fundraising. I know some local media people and can probably get us some coverage. Anybody else local think it's a good idea? I'ld be willing to do the legwork and any proceeds and publicity could benefit your son. Hit me up if your interested.
05-03-2005, 09:36 PM
#8
Originally Posted by pdxmax97
Thread stuck? Sorry Unc I'm a noob so I hope that doesn't mean I shouldn't reply (please don't ban me for my 4th post) but I wanted to let Red92MaxSe know that I feel for him. I have a 3 year old daughter at home and can't imagine the trials and tribulations involved in caring for a chronically ill child. Anyways I'm in PDX too and thought maybe a show n shine could be held so that local org members could show our support and solidarity to your family's cause and we could do come fundraising. I know some local media people and can probably get us some coverage. Anybody else local think it's a good idea? I'ld be willing to do the legwork and any proceeds and publicity could benefit your son. Hit me up if your interested.
You need to make more posts
I just tried to send a PM, but I got pwned by the newbie rules.
Thanks for the offer, but I think the MDA does a good job and I am working on a golf tournament. Most of the active "local guys" are in the Seattle area, with just a couple in the Portland area. It would be cool, but I don't know if there would be enough local interest to pull off something big enough to draw any media attention or raise much money.
Please don't take offense, but I think better terms than "chronically ill" would be encumbered or challenged. Right now, he is fairly normal. If you were to see us walking in a store, you probably wouldn't know anything is wrong, unless you noticed it was difficult for him to go up stairs. His mind is normal and he is actually extremely bright. His mental abilities will not be declining, just his muscles are destroying themselves at the genetic level. Unless they find a cure, his ability to walk will get worse, until he needs to be in a wheelchair. Most kids with Duchenne are in a wheelchair around age 12 or so. Eventually all of his muscles deteriorate, including heart and lung muscles. As of now, most people with Duchenne die of respiratory problems between the age of 20 and 30.
Like I said, I don't want to offend you, I just wanted some facts out there that a lot of people don't know about.
On a side note, you should also check out www.nwmaxima.com it is kind of a local offshoot of the .org. It's not the same, but has a lot of the local guys there. Several of us will be racing down at Woodburn June 18.
05-04-2005, 08:39 PM
#9
Yeah, being a newbie sux.
Bro, no offense taken, and I meant none in my use of the term "chronically ill". I respect your thoughts on the issue and only wanted to convey my feelings of understanding as a fellow father. I appreciate knowing your perspective on the labels that people use and how they can be less than accurate (or even derogatory) even though they are commonly used. I guess I didn't think about my choice of words and for that I apologize.
I thought I would throw the idea out there to do something to meet others and support a good cause. I don't have money to donate, but can donate time and effort. I don't have all the time in the world and was simply thinking of something small, anything raised would be better than nothing. I can understand you've got things going on already with the golf tourney and I didn't expect that this would be something you would personally be interested in besides attending. I haven't seen a lot of folks from our neck of the woods on here but would like to meet any of them just the same.
I've been to nwmaxima.com but haven't looked real deep. I just recently got put on to the fact that these sites existed.
Bro, no offense taken, and I meant none in my use of the term "chronically ill". I respect your thoughts on the issue and only wanted to convey my feelings of understanding as a fellow father. I appreciate knowing your perspective on the labels that people use and how they can be less than accurate (or even derogatory) even though they are commonly used. I guess I didn't think about my choice of words and for that I apologize.
I thought I would throw the idea out there to do something to meet others and support a good cause. I don't have money to donate, but can donate time and effort. I don't have all the time in the world and was simply thinking of something small, anything raised would be better than nothing. I can understand you've got things going on already with the golf tourney and I didn't expect that this would be something you would personally be interested in besides attending. I haven't seen a lot of folks from our neck of the woods on here but would like to meet any of them just the same.
I've been to nwmaxima.com but haven't looked real deep. I just recently got put on to the fact that these sites existed.
07-18-2005, 08:55 PM
#13
Originally Posted by Snolife
Donation is sent, my prayers and thoughts are with you.
Our fundraiser is over (this thread is still up in the stickies). I am donating the money directly to the Muscular Dystrophy Association (MDA). I don't have any more receipts, though. I gave them back to the MDA after the fundraiser.
Anyone else interested should donate money to the MDA through their secure website at:
www.mdausa.org
There is also a lot of information about MD and the type my son has, which is called Duchenne.
Again, thanks a lot for your thoughts and prayers.
07-18-2005, 11:18 PM
#14
Newbie - Just Registered
Join Date: Feb 2005
Posts: 7
As a small note, my school (Monsignor Farrell in Staten Island) and our sister school hold the largest MDA high school fundraiser in the country called the Superdance. Last year we raised i believe over $150,000 dollars. For those who watch the telethon, my school and sister school send representatives to present the check on TV. My thoughts and prayers go out to you, your son and wife. I only hope these efforts can some day find a cure.
07-20-2005, 01:51 PM
#15
Guest
Posts: n/a
My heart and prayers to you.
Yes, I understand how to most others he's "normal". I only recently discovered this site and am still a "lurker" but decided to post to lend my support.
My sister had Muscular Dystrphy, she died in 1984 at age 20. I think she held oon just to spite the Dr.s who said she'd never make 20. Her 20th b'day was June 16th, she died on July 1st. She held on til our Dad could get there to see her.
I remember that night, I threw a Dr. against a wall. I took 14 years of my life to realize it wasn't MY fauilt!! The one thing I couldn't protect her from!
I myself have been diagnosed with muscular Atrophy. I ignore it.
I have 3 daughters, the oldest 5. I think about this EVERY day!!
Our children are precious. They are EVERYTHING!!
I hope this comes across the right way. I DO understand. They are our lives. My prayers and hopes are with you.
Yes, I understand how to most others he's "normal". I only recently discovered this site and am still a "lurker" but decided to post to lend my support.
My sister had Muscular Dystrphy, she died in 1984 at age 20. I think she held oon just to spite the Dr.s who said she'd never make 20. Her 20th b'day was June 16th, she died on July 1st. She held on til our Dad could get there to see her.
I remember that night, I threw a Dr. against a wall. I took 14 years of my life to realize it wasn't MY fauilt!! The one thing I couldn't protect her from!
I myself have been diagnosed with muscular Atrophy. I ignore it.
I have 3 daughters, the oldest 5. I think about this EVERY day!!
Our children are precious. They are EVERYTHING!!
I hope this comes across the right way. I DO understand. They are our lives. My prayers and hopes are with you.
07-21-2005, 10:36 PM
#16
Originally Posted by Den.
Our children are precious. They are EVERYTHING!!
I hope this comes across the right way. I DO understand. They are our lives. My prayers and hopes are with you.
I hope this comes across the right way. I DO understand. They are our lives. My prayers and hopes are with you.
Sometimes I find myself with a very heavy heart, thinking about what could potentially happen in the future. Then I have to regroup and remember that we still have a long way to go and we enjoy him today. What happens in the future is not where I need to look right now.
Thanks for the kind words.
07-23-2005, 08:59 AM
#17
Guest
Posts: n/a
Originally Posted by Red92MaxSE
I totally understand what you meant. My son means more to me than anything and he is precious in so many ways. The MD is not going to change his brilliant little mind or his wonderful personality.
Sometimes I find myself with a very heavy heart, thinking about what could potentially happen in the future. Then I have to regroup and remember that we still have a long way to go and we enjoy him today. What happens in the future is not where I need to look right now.
Thanks for the kind words.
Sometimes I find myself with a very heavy heart, thinking about what could potentially happen in the future. Then I have to regroup and remember that we still have a long way to go and we enjoy him today. What happens in the future is not where I need to look right now.
Thanks for the kind words.
Today is all we CAN worry about. Tomorrow there may be a breakthrough. We can only hope. (And pray).
Best wishes, he sounds like a GREAT kid!
08-12-2005, 10:39 AM
#18
Junior Member
Join Date: Jul 2003
Posts: 29
idea maybe
Hey man,
Just an idea for the fundraiser, swing by the Coast Guard base in Portland and ask to speak with the public affairs officer, if you want I could find out who it is for you. If you have flyers or info ,, they can post it on base and thats a big base for the area with alot of units so I know youve got some golfers there who would be intrested depending on the underway schedule of the units, but its definantly worth a shot for some local support. Coasties have a good track record of stepping up to the plate for things such as this. Thats what we do .
crhaun@yahoo.com if you need any info on contacts over there.
Christopher
Just an idea for the fundraiser, swing by the Coast Guard base in Portland and ask to speak with the public affairs officer, if you want I could find out who it is for you. If you have flyers or info ,, they can post it on base and thats a big base for the area with alot of units so I know youve got some golfers there who would be intrested depending on the underway schedule of the units, but its definantly worth a shot for some local support. Coasties have a good track record of stepping up to the plate for things such as this. Thats what we do .
crhaun@yahoo.com if you need any info on contacts over there.
Christopher
08-18-2005, 09:16 PM
#19
Originally Posted by TN98MAXSE
Hey man,
Just an idea for the fundraiser, swing by the Coast Guard base in Portland and ask to speak with the public affairs officer, if you want I could find out who it is for you. If you have flyers or info ,, they can post it on base and thats a big base for the area with alot of units so I know youve got some golfers there who would be intrested depending on the underway schedule of the units, but its definantly worth a shot for some local support. Coasties have a good track record of stepping up to the plate for things such as this. Thats what we do .
crhaun@yahoo.com if you need any info on contacts over there.
Christopher
Just an idea for the fundraiser, swing by the Coast Guard base in Portland and ask to speak with the public affairs officer, if you want I could find out who it is for you. If you have flyers or info ,, they can post it on base and thats a big base for the area with alot of units so I know youve got some golfers there who would be intrested depending on the underway schedule of the units, but its definantly worth a shot for some local support. Coasties have a good track record of stepping up to the plate for things such as this. Thats what we do .
crhaun@yahoo.com if you need any info on contacts over there.
Christopher
I am still mulling some other fundraiser ideas. I have been working 6 days a week since the summer started and I haven't had enough free time to really plan anything. I also have a couple of friends that are Oregon State Police troopers and they would like to do some kind of MDA fundraiser or work with me on something. One of them suggested a Texas Hold 'em Poker tourney, too.
10-28-2005, 12:57 PM
#22
Originally Posted by Omar
Did/Are you looking into alternative medicine?
I have talked about it with a local alternative medicine doctor here. The only thing it can really offer him is improved flexibility and with that the possibility of being able to walk a little longer. Acupuncture would be the best form of doing this, according to the doctor.
Since MD is genetic, his body does not produce dystropin (a protein that holds muscles together), so the muscles basically destroy themselves. There is no way to reverse this (yet) and no method has been found to substitute dystrophin. The best hope right now is that researchers can find a vehicle to implant good dystrophin (which they have figured out how to develop independently) into a patient with MD.
We are giving him supplements, but they mostly just improve his overall health and strength so that he can walk/live longer. We also have him in physical therapy, occupational therapy and work with him at home on flexibility and strength.
12-03-2005, 11:21 PM
#23
Senior Member
Join Date: Sep 2005
Posts: 311
Hey man im so sorry to hear that.I have a 3 year old nephew and i love him more than life its self so i cant even begin to imagine what thats like when its your own son.Man just know that sickness want last forever.Sorry I cant put it in better words.So after all i hope you and your wife make it through this ok
03-03-2006, 11:27 PM
#24
Junior Member
Join Date: Feb 2006
Posts: 62
My older brother has a rare disease where his body can not produce muscle cells, docs thought it was Duchennes' but it wasn't. I'm 16 now, growing up was pretty rough for me and my brother being that our brother was in the hospital throughout most of his teenage years, until he got a Tracheostomy tube put in and a G-tube for feeding in his stomach. He's 21 now, If you need any help with anything in the future with wheelchairs or accessories, PM me I can try to help you. And if his chest gets congested more and more as he gets older, look into a Trache, my brother hasnt been admitted to the hospital since he got it.
sorry for that long retarded story.
RahEEL
-Soon to be "Youngest 6th Gen Owner"
(9/7/2006)
sorry for that long retarded story.
RahEEL
-Soon to be "Youngest 6th Gen Owner"
(9/7/2006)
05-05-2006, 06:14 AM
#26
^^^
Thanks for the kind words. I actually do check on this thread every so often. There has been some promising scientific work done that keeps our hopes up. My son's doctor is going to a worldwide MD conference in the fall and he has very high hopes for progress.
Thanks for the kind words. I actually do check on this thread every so often. There has been some promising scientific work done that keeps our hopes up. My son's doctor is going to a worldwide MD conference in the fall and he has very high hopes for progress.
01-03-2008, 10:32 AM
#29
Member
Join Date: Dec 2007
Location: Redding, California
Posts: 71
Clive, you and your son are in our prayers. RE: alternative medicine. I had sister in law who had what seemed like MD, but it came on in her 40's.
I've spent a lot of time researching this, so-- for what it's worth, here are some things I found that might help...
Many adult-onset diseases, perhaps even those that affect children can be traced to a genetic cause. DNA, the coded molecule that determines all of our traits-- even our species-- is by nature a highly unstable molecule. To "lock in" our coding at conception, our DNA is
bound at the ends of the molecule with about eight to ten "locks" called telemeres. As we age, or are exposed to disease and environmental factors, these telemeres drop off one by, making the DNA progressively
more unstable and vulnerable to genetic mutation and the possibility
of the onset of genetic disease.
Recent research has shown that the telemeres can actually be REPAIRED
and REBUILT by taking a combination of two supplements: Alpha-Lipoic Acid and Acetyl L-Carnitine. Google it; you'll see what I mean. Clinical studies have shown that this supplement can reverse the aging process
and the effects of some genetic-onset disease. It might help. It also helps to rebuild the internal structures of our Mitochondria, the little
organels inside our cells that produce a compound our cells use for energy. Definitely a good thing.
Hope this helps...
I've spent a lot of time researching this, so-- for what it's worth, here are some things I found that might help...
Many adult-onset diseases, perhaps even those that affect children can be traced to a genetic cause. DNA, the coded molecule that determines all of our traits-- even our species-- is by nature a highly unstable molecule. To "lock in" our coding at conception, our DNA is
bound at the ends of the molecule with about eight to ten "locks" called telemeres. As we age, or are exposed to disease and environmental factors, these telemeres drop off one by, making the DNA progressively
more unstable and vulnerable to genetic mutation and the possibility
of the onset of genetic disease.
Recent research has shown that the telemeres can actually be REPAIRED
and REBUILT by taking a combination of two supplements: Alpha-Lipoic Acid and Acetyl L-Carnitine. Google it; you'll see what I mean. Clinical studies have shown that this supplement can reverse the aging process
and the effects of some genetic-onset disease. It might help. It also helps to rebuild the internal structures of our Mitochondria, the little
organels inside our cells that produce a compound our cells use for energy. Definitely a good thing.
Hope this helps...
I have talked about it with a local alternative medicine doctor here. The only thing it can really offer him is improved flexibility and with that the possibility of being able to walk a little longer. Acupuncture would be the best form of doing this, according to the doctor.
Since MD is genetic, his body does not produce dystropin (a protein that holds muscles together), so the muscles basically destroy themselves. There is no way to reverse this (yet) and no method has been found to substitute dystrophin. The best hope right now is that researchers can find a vehicle to implant good dystrophin (which they have figured out how to develop independently) into a patient with MD.
We are giving him supplements, but they mostly just improve his overall health and strength so that he can walk/live longer. We also have him in physical therapy, occupational therapy and work with him at home on flexibility and strength.
Since MD is genetic, his body does not produce dystropin (a protein that holds muscles together), so the muscles basically destroy themselves. There is no way to reverse this (yet) and no method has been found to substitute dystrophin. The best hope right now is that researchers can find a vehicle to implant good dystrophin (which they have figured out how to develop independently) into a patient with MD.
We are giving him supplements, but they mostly just improve his overall health and strength so that he can walk/live longer. We also have him in physical therapy, occupational therapy and work with him at home on flexibility and strength.
Thread
Thread Starter
Forum
Replies
Last Post
evonder73
4th Generation Maxima (1995-1999)
6
09-01-2015 02:21 PM