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Hey Henry and Gibson people:
First of all, thanks for putting me in the finals for Gibson's "Fight For your Right to Rock" contest. I'll admit this is as close as I've come to winnning anything that nice. A Gibson Les Paul Standard is an amazing guitar...no 2 bones about it.
However, I really think that if I do win, something good should come out of it.
I don't know if this is possible, but would Gibson (if I can get enough votes) donate the value of the guitar to a local charity? It would be this one:
http://www.friendsof...erose.com/main/
Katie Rose Wilson is a little girl who was born with a rare tumor in her mouth called lymphangioma. Her parents have gone to see specialists, but they are running out of money for the operations. She's a really nice girl from a hard working family...but I have concerns that they aren't going to be able to cover the costs to give this girl a chance at a normal life.
I love guitars dearly, but this is a person's life. If this reaches anyone, I'd ask if you'd vote not for me, but to ask Gibson to donate to this charitable cause. Thanks for reading, and here's the link to the contest.
http://www2.gibson.c...eo-Contest.aspx
EDIT: The contest ends Friday. Unless I can win this or the family can somehow raise the money, that little girl isn't going to be able to have her operation.
http://www.blogpaas...._while_fighting
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If I win the "Fight For Your Right to Rock" contest Will Gibson to donate the value of the guitar to a charity?
#2
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Posted 25 December 2011 - 12:04 PM
A bit more on Katie Rose. She's a very smart and well-spoken 3 year old girl who's already been through a lot. Here she is with fellow Lymphangioma patient Maddox. (Both are being treated by Dr. Waner in New York.)
Lymphangiomas are uncommon, hamartomatous, congenital malformations of the lymphatic system that involve the skin and subcutaneous tissues. The classification of lymphangiomas lacks a standard clear definition and universal application, in part because of the nature of lymphangiomas, which represent a clinicopathologic continuum. The classification most frequently used divides these lesions into 2 major groups based on the depth and the size of these abnormal lymph vessels. The superficial vesicles are called lymphangioma circumscriptum. The more deep-seated group includes cavernous lymphangioma and cystic hygroma. Many categorize cystic hygroma as a variant of cavernous lymphangioma.
Lymphangiomas can occur anywhere in the skin and the mucous membranes. The most common sites are the head and the neck, followed by the proximal extremities, the buttocks, and the trunk. However, they sometimes can be found in the intestines, the pancreas, and the mesentery. Deeper cystic lesions usually occur in areas of loose and areolar tissue, typically the neck, the axilla, and the groin. Their skin involvement ranges from small, well-demarcated areas to large, diffuse regions with unclear borders.
Lymphangioma circumscriptum, the common form of cutaneous lymphangioma, is characterized by persistent, multiple clusters of translucent vesicles that usually contain clear lymph fluid (often compared with frog spawn).[1] These vesicles represent superficial saccular dilations from underlying lymphatic vessels that occupy the papilla and push upward against the overlying epidermis. Each skin lesion may range from a minute vesicle to a small bulla-sized lesion. These vesicles can be clear or vary from pink to dark red because of serosanguineous fluid and hemorrhage. These vesicles often are associated with verrucous changes, which give them a warty appearance.
In the case of lymphangioma circumscriptum, the underlying lesions constitute abnormal dilated lymph vessels involving the upper part of the dermis. The sites of predilection are the proximal extremities, trunk, axilla, and oral cavity, especially the tongue. Involvement in other areas, such as the scrotum, is not uncommon. Lymphangioma circumscriptum has a high recurrence rate after excision because of its deep component (see Pathophysiology).
(cited from http://emedicine.med...086806-overview )
There will be other guitars........
#3
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Posted 30 December 2011 - 05:49 PM
Update:
I have been campaigning extensively, trying to garner votes wherever I can on Facebook, mylespaul.com and a whole host of other websites. I have also read the contest rules. I know that I'm up against some really good competition, but there are many in my community that would like to see Katie Rose get help.
I've also been asked some questions about this prize (if I win), and I'd like to answer them here:
First, the question came up: "Why don't you just take the guitar if you win and auction it off? Maybe you could get some celebrities to sign it to help raise money."
To answer this: First, I'm not sure if a local auction (or even an online auction) of the guitar as-is would raise the same amount of money as would donating the value of the prize. This is especially true locally. I live in a rural area that is facing a hard recession. People as it is barely have enough money to get by, let alone fork out large sums of money for an electric guitar.
In terms of getting celebrity signatures, there's 2 issues with this: First, since this is a contest created in response to the DOJ's heavyhandedness while enforcing the Lacey Act; many celebrities have chosen to remain mum on the topic...even those that are endorsed by The Gibson Guitar Company for fear of alienating members of their fanbase. I get this. Second, as an anonymous person (aka "average joe") I would have a very difficult time getting access to celebrities for signatures. Since starting this campaign I am fully aware of how limited I am in terms of getting my message out there to help the Wilson Family.
Second, I have been asked questions about the status of insurance for the Wilson Family in terms of their health coverage. To answer, I think the best people to ask this to would be the Wilsons themselves, but from my understanding: When the girl was first diagnosed with Lympangioma, and they found Dr. Waner in NYC, they were told by their health provider that the health insurance would not pay for the procedures since the doctor, and the hospital are out of network. Since that time they have found a new medical provider, but there is a 10 thousand dollar deductible, and I'm pretty certain that does not include airfare expenditures to New York for treatments.
This issue isn't something new in my community: A lot of generous people have donated to the Wilsons in the hopes that Katie Rose will be successfully treated. But the procedures have to continue, and she's not out of the woods. I honestly don't know if this will ever end, but what can the family and her mother do?
Can you give up on a child like this? I shudder to consider that.
As for my personal ties to the family: I am a friend. I have known Katie Rose's mother for years. Katie Rose's grandfather is my landlord. I've long known about the struggles of this family. For a long time I did what everyone else did...I would provide in the jars left at local markets, I'd leave change where I could. I'd attend fundraisers.
In truth, when this contest came about, and I learned I was a finalist, I was very excited...this is as close as I've ever come to winning something like this. Over Christmas I had a card sent to me by this family...and it sort of hit me....maybe there's more important things than my own desires.
In fact, since entering this and noting the responses of people in my community, I think a win would re-energize the local community itself towards helping this girl. We do care, but as stated earlier, the area has been hit hard by the recession, and there is a malaise in the town itself...last year we lost a 5 year old girl named Khylee Monson to a brain tumor.
It's one thing when adults get sick...it's another when children do...especially when they're this young.
I'll be honest that it is of more benefit for me, and the family for Gibson to reward the prize money directly to her. To go further, I think even publishing the results in the lifestyles section of the website would do just as much good for this 3 year old girl as would donating the value of the guitar itself. I am also of the impression that Gibson, as a company, would do nothing but benefit by showing compassion and concern for a 3 year old girl with a debilitating illness. Even thought times are tough, and we live in what is often at best described as a cold and cruel world, I still believe that doing well by others...especially children...comes back to you tenfold.
"Whomever only gives a cup of cold water for these little ones to drink because he is a disciple, amen I say to you he will not lose his reward."
Of course, this might all be a moot point if I lose.
But if I do I am prepared to do what I can to help this family in that event as well. I like my chances though...a lot of people are voting on this. My video has just as many views as those put out by Gibson that featured content from Gibson employees tied in with the speech Mr. Juszkiewicz gave shortly after the second raid. I have also left my video open for commentary where I am more than willing to debate anyone on its content, or for that matter, the Lacey Act itself. I am not an expert, but I was passionate enough as a player and a consumer to learn something about the laws after Gibson's troubles.
If you are reading this, I would ask you...is it wrong to want to help a 3 year old girl get well?
Fair Warning...If I win, I'm going to ask Gibson to help me in this.
Have a safe and happy new year. And thanks again for reading.
I have been campaigning extensively, trying to garner votes wherever I can on Facebook, mylespaul.com and a whole host of other websites. I have also read the contest rules. I know that I'm up against some really good competition, but there are many in my community that would like to see Katie Rose get help.
I've also been asked some questions about this prize (if I win), and I'd like to answer them here:
First, the question came up: "Why don't you just take the guitar if you win and auction it off? Maybe you could get some celebrities to sign it to help raise money."
To answer this: First, I'm not sure if a local auction (or even an online auction) of the guitar as-is would raise the same amount of money as would donating the value of the prize. This is especially true locally. I live in a rural area that is facing a hard recession. People as it is barely have enough money to get by, let alone fork out large sums of money for an electric guitar.
In terms of getting celebrity signatures, there's 2 issues with this: First, since this is a contest created in response to the DOJ's heavyhandedness while enforcing the Lacey Act; many celebrities have chosen to remain mum on the topic...even those that are endorsed by The Gibson Guitar Company for fear of alienating members of their fanbase. I get this. Second, as an anonymous person (aka "average joe") I would have a very difficult time getting access to celebrities for signatures. Since starting this campaign I am fully aware of how limited I am in terms of getting my message out there to help the Wilson Family.
Second, I have been asked questions about the status of insurance for the Wilson Family in terms of their health coverage. To answer, I think the best people to ask this to would be the Wilsons themselves, but from my understanding: When the girl was first diagnosed with Lympangioma, and they found Dr. Waner in NYC, they were told by their health provider that the health insurance would not pay for the procedures since the doctor, and the hospital are out of network. Since that time they have found a new medical provider, but there is a 10 thousand dollar deductible, and I'm pretty certain that does not include airfare expenditures to New York for treatments.
This issue isn't something new in my community: A lot of generous people have donated to the Wilsons in the hopes that Katie Rose will be successfully treated. But the procedures have to continue, and she's not out of the woods. I honestly don't know if this will ever end, but what can the family and her mother do?
Can you give up on a child like this? I shudder to consider that.
As for my personal ties to the family: I am a friend. I have known Katie Rose's mother for years. Katie Rose's grandfather is my landlord. I've long known about the struggles of this family. For a long time I did what everyone else did...I would provide in the jars left at local markets, I'd leave change where I could. I'd attend fundraisers.
In truth, when this contest came about, and I learned I was a finalist, I was very excited...this is as close as I've ever come to winning something like this. Over Christmas I had a card sent to me by this family...and it sort of hit me....maybe there's more important things than my own desires.
In fact, since entering this and noting the responses of people in my community, I think a win would re-energize the local community itself towards helping this girl. We do care, but as stated earlier, the area has been hit hard by the recession, and there is a malaise in the town itself...last year we lost a 5 year old girl named Khylee Monson to a brain tumor.
It's one thing when adults get sick...it's another when children do...especially when they're this young.
I'll be honest that it is of more benefit for me, and the family for Gibson to reward the prize money directly to her. To go further, I think even publishing the results in the lifestyles section of the website would do just as much good for this 3 year old girl as would donating the value of the guitar itself. I am also of the impression that Gibson, as a company, would do nothing but benefit by showing compassion and concern for a 3 year old girl with a debilitating illness. Even thought times are tough, and we live in what is often at best described as a cold and cruel world, I still believe that doing well by others...especially children...comes back to you tenfold.
"Whomever only gives a cup of cold water for these little ones to drink because he is a disciple, amen I say to you he will not lose his reward."
Of course, this might all be a moot point if I lose.
But if I do I am prepared to do what I can to help this family in that event as well. I like my chances though...a lot of people are voting on this. My video has just as many views as those put out by Gibson that featured content from Gibson employees tied in with the speech Mr. Juszkiewicz gave shortly after the second raid. I have also left my video open for commentary where I am more than willing to debate anyone on its content, or for that matter, the Lacey Act itself. I am not an expert, but I was passionate enough as a player and a consumer to learn something about the laws after Gibson's troubles.If you are reading this, I would ask you...is it wrong to want to help a 3 year old girl get well?
Fair Warning...If I win, I'm going to ask Gibson to help me in this.
Have a safe and happy new year. And thanks again for reading.
#4
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Posted 01 January 2012 - 12:46 PM
One more article and I'll let it go. (I do post daily on the Facebook wall...no this is not a scam. This article was published in October.)
http://www.ledger-di.../07/katie-rose/
Other articles:
http://www.ledger-di...eeds-your-help/
http://www.ledger-di...aturday-jan-23/
http://www.diocese-s...306toddler.html
Thanks for reading....Here's to (hopefully) a better 2012. ~Scott
Quote
In the historic mining town of Pine Grove there lives a three-year-old girl that beams brighter than any chunk of gold. She wears a tutu dress and declares that her favorite color is pink, and manages to unveil within one breath how much she really loves Barbies and ponies. Katie Rose exudes so much spirit that an onlooker would never guess a rare tumor is growing inside her mouth.
But in truth, that is the disheartening reality for Katie and her mother Ilona Wilson, who for the last two years, has been on a trying journey to save her daughter.
From the moment Katie was born, Wilson felt there was something wrong with her daughter’s upper lip — it looked puffy and swollen — but after several trips to different doctors, Wilson was told the same thing over and over again — that she just had cute, pouty lips.
At 11 months old, Katie wound up in the emergency room. Her lip had gotten larger and was leaking blood and pus. After five days of being hooked up to an IV, a CT Scan and MRI finally revealed a tumor in her upper lip and gums, yet the doctors were still not able to determine the type of tumor it was.
Three months later, Wilson found a doctor at Stanford University willing to perform a biopsy on the unrecognizable tumor, and Katie Rose was diagnosed with lymphangioma, also known as lymphatic malformation.
“She was 14 months old when we got the diagnosis,” Wilson recalled. “That’s like 99 percent of your battle — is knowing what it is and then finding the treatment for it.”
After several searches online, Wilson found Dr. Milton Waner, a pediatric facial plastic surgeon based in New York who was familiar with Katie’s tumor and willing to take her on as a patient. But, still the battle continued, and Wilson’s journey soon became one paved with paperwork. Deeming the doctor out of network, Wilson’s insurance company withheld coverage for a surgery for the first six months, and even after approval, Wilson must pay a $10,000 deductible each year before the insurance company will cover any cost.
“She’s had five surgeries and three rounds of injections,” Wilson said. “She had a surgery in January to remove a little bit of extra tumor that she had, and in March we went back for injections, and she was looking good, but then I started noticing that it was getting bigger and now its even worse and blistery.”
“I feel like I’m just fighting and fighting all the time, and it gets really tiring,” she continued. “I’ve already gotten five approvals — why do I have to keep getting the same approval over and over again? It’s frustrating that we pay $1,200 a month for insurance — for our family of seven — and they still won’t approve things.”
Now preparing for Katie’s sixth surgery, Wilson is not only dealing with an exhaustive quest to get another insurance approval for the procedure, but is also being haunted by the harsh fact that the funds reserved for Katie Rose will be completely depleted after this upcoming trip.
“The Catholic Church was really generous and held a fundraiser two years ago, and they raised $14,000, but every time we go it costs like $5,000, and we’ve been eight times,” said Wilson. “The money that was raised for us was saved for her trips and her surgeries, because that’s more important to me. We have $35,000 that we owe in medical debt, and we’ll deal with it after this is done, but right now it’s getting there and getting her treated.”
Katie Rose and Wilson will leave for New York on Oct. 15. There is a special donation account for Katie at the Bank of Amador. Cash, or checks written to “Friends of Katie Rose,” may be mailed to or dropped off at any Bank of Amador Branch. For more about Katie’s story and updates, visit www.friendsofkatierose.com. There is also a Paypal account linked to the “Friends of Katie Rose” account on the website.
But in truth, that is the disheartening reality for Katie and her mother Ilona Wilson, who for the last two years, has been on a trying journey to save her daughter.
From the moment Katie was born, Wilson felt there was something wrong with her daughter’s upper lip — it looked puffy and swollen — but after several trips to different doctors, Wilson was told the same thing over and over again — that she just had cute, pouty lips.
At 11 months old, Katie wound up in the emergency room. Her lip had gotten larger and was leaking blood and pus. After five days of being hooked up to an IV, a CT Scan and MRI finally revealed a tumor in her upper lip and gums, yet the doctors were still not able to determine the type of tumor it was.
Three months later, Wilson found a doctor at Stanford University willing to perform a biopsy on the unrecognizable tumor, and Katie Rose was diagnosed with lymphangioma, also known as lymphatic malformation.
“She was 14 months old when we got the diagnosis,” Wilson recalled. “That’s like 99 percent of your battle — is knowing what it is and then finding the treatment for it.”
After several searches online, Wilson found Dr. Milton Waner, a pediatric facial plastic surgeon based in New York who was familiar with Katie’s tumor and willing to take her on as a patient. But, still the battle continued, and Wilson’s journey soon became one paved with paperwork. Deeming the doctor out of network, Wilson’s insurance company withheld coverage for a surgery for the first six months, and even after approval, Wilson must pay a $10,000 deductible each year before the insurance company will cover any cost.
“She’s had five surgeries and three rounds of injections,” Wilson said. “She had a surgery in January to remove a little bit of extra tumor that she had, and in March we went back for injections, and she was looking good, but then I started noticing that it was getting bigger and now its even worse and blistery.”
“I feel like I’m just fighting and fighting all the time, and it gets really tiring,” she continued. “I’ve already gotten five approvals — why do I have to keep getting the same approval over and over again? It’s frustrating that we pay $1,200 a month for insurance — for our family of seven — and they still won’t approve things.”
Now preparing for Katie’s sixth surgery, Wilson is not only dealing with an exhaustive quest to get another insurance approval for the procedure, but is also being haunted by the harsh fact that the funds reserved for Katie Rose will be completely depleted after this upcoming trip.
“The Catholic Church was really generous and held a fundraiser two years ago, and they raised $14,000, but every time we go it costs like $5,000, and we’ve been eight times,” said Wilson. “The money that was raised for us was saved for her trips and her surgeries, because that’s more important to me. We have $35,000 that we owe in medical debt, and we’ll deal with it after this is done, but right now it’s getting there and getting her treated.”
Katie Rose and Wilson will leave for New York on Oct. 15. There is a special donation account for Katie at the Bank of Amador. Cash, or checks written to “Friends of Katie Rose,” may be mailed to or dropped off at any Bank of Amador Branch. For more about Katie’s story and updates, visit www.friendsofkatierose.com. There is also a Paypal account linked to the “Friends of Katie Rose” account on the website.
http://www.ledger-di.../07/katie-rose/
Other articles:
http://www.ledger-di...eeds-your-help/
http://www.ledger-di...aturday-jan-23/
http://www.diocese-s...306toddler.html
Thanks for reading....Here's to (hopefully) a better 2012. ~Scott
#5
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Posted 20 January 2012 - 02:39 PM
Congratulations to Mayer Shabetay from Panama for winning the Gibson "Fight For Your Right To Rock" contest. I had a lot of support, but it wasn't enough to overcome his outstanding video which I hope will spread awareness about the Lacey Act.
As for my community, we will seek other ways to try to help Katie Rose Wilson get her operation. For those that read this thread and voted, thanks.
~Scott
As for my community, we will seek other ways to try to help Katie Rose Wilson get her operation. For those that read this thread and voted, thanks.
~Scott
#6
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Posted 04 February 2012 - 03:08 PM
BIG UPDATE!
I WON!! WHOO HOO!
I got confirmation from Sean D. Thanks, guys!
I think the plan at this point....I'll take the guitar (a right handed one...guaranteed I can't play it), and we will be running a raffle with all proceeds going to the friendsofkatierose. Thanks again!!
I WON!! WHOO HOO!
I got confirmation from Sean D. Thanks, guys!
I think the plan at this point....I'll take the guitar (a right handed one...guaranteed I can't play it), and we will be running a raffle with all proceeds going to the friendsofkatierose. Thanks again!!
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