Deke the Deuce 2016

$605 of $12k goal

Raised by 20 people in 6 months
John Fontana
for ADVOCURE NF2
  PALM HARBOR, FL
In an attempt to raise awareness and raise a few funds for research of the genetic neurological disorder Neurofibromatosis Type II (or NF2), the "Deke the Deuce" campaign has been set up by long-time Tampa Bay Lightning and NHL blogger John Fontana who has been living with and hobbled by the disease

Contributions made through the Deke the Deuce campaign are going toward the Advocure NF2 charitable organization, a non-profit whose goal is to raise awareness and help fund research of the NF2 disease.

Even if you cannot donate to the ause, please consider sharing word about the campaign through social media.
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Update 6
2 months ago
With the NHL season (almost entirely) over, the Deke the Deuce campaign draws to a close. I want to thank everyone who contributed and for everyone who helped push the campaign through social media.

Perhaps another charity drive in an attempt to raise awareness of and fund research of Neurofibromatosis Type II will come up during the 2016-17 NHL season, but for now the initial campaign closes.

If you'd still like to contribute to the cause, consider a direct donation to www.advocurenf2.org .

Again, thank you for helping out.
John Fontana
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Update 5
3 months ago
May is Neurofibromatosis Awareness Month, shedding light on both NF1 and and NF2. That being said, let me share a link with you to NF2Is.org that sheds more light on the disease that the Deke the Deuce campaign is trying to she light on and gain support for the fight against it:

http://www.nf2is.org/awareness.php
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Update 4
4 months ago
Originally posted as an update on Raw Charge on April 16. View this link for proper links and such: http://www.rawcharge.com/2016/4/16/11443926/deke-the-deuce-nf2-neurofibromatosis-type-2-hockey-charity-NHL-fundraising

When I started the Deke the Deuce charity drive, one thing that I took into consideration was the sport of hockey and the NHL's ability to be philanthropic in one way or another. I've seen best-intentions, better-welfare fundraising drives. I've seen teams and the league step up for the issues and causes that have the widest effects on society. What I hadn't done was look to see if there was any known NHL player or team doing something in charity's name toward the disease Neurofibromatosis Type 2 (NF2). Yes, there are two different types of the genetic disease Neurofibromatosis and seeing this is the second, it's rarer. Just how far into the sport does NF2 charity work go? The answer is not far at all, at least not publicly from a bit of research through Google.

Right now, even though it's limited in its reach, Deke the Deuce is the lead story if you search for Neurofibromatosis Type II (the more formal numbering) on Google News while paired with the term "hockey". Change the number listing from the stately II to 2 and once again, Raw Charge invocations of the term lead the top news... with a follow up about a Christian School student. The sport isn't part of the article.

There have been hockey fundraisers with NF2 in mind. One happened in November 2014 in Fort Wayne. Minnesota saw a high school tournament at Xcel Energy Center in memory of Zac Bartz who had Neurofibromatosis Type 1 (different version of the disease but worth noting how far this case went).

As I said above, my research is limited and I could likely shuffle through just about every team in the NHL through online searches and come up empty. That doesn't mean they aren't involved in this leg of philanthropy (helping fund research or non-profits tied to the disease - either version)... What it does mean is that it's not been a publicity grabbing event. It also means that Deke the Deuce (and its limited goal of $12,016 for the non-profit entity Advocure NF2) is at the forefront of hockey in online media regarding charity work in the sport for this disease.

Deke the Deuce is not about me directly, it is trying to raise awareness of an affliction I that hits 1 in just about 25,000 and is passed down genetically. While hearing loss is one aspect of the disease that gives it quick attention, so is sensation loss, vision issues and other neurological anomalies from paraplegia to paralysis and death. That's what tumors growing on nerves will do for a person.

Please consider making a donation to the drive, or perhaps at least share word on the charity campaign.
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Update 3
6 months ago
1
1
The disease Neurofibromatosis Type II (NF2) is a complication, to say the least. About 1 person out of every 25,000 worldwide has the genetic disorder ( http://www.ctf.org/Learn-About-NF/Facts-Statistics.html) which causes the growth of benign (non cancerous) tumors on nerves throughout the body. NF2 stands out by way of its habit of growing tumors that cause deafness, but that’s just one type of impairment that the disease causes. Mobility impairment, paraplegia or paralysis, visual impairment and death can all be brought on by way of the disease. It’s also possible for these benign growths to become cancerous.
While there are drugs in trial to fight against NF2, most tumors that cause impairment require surgical removal. Surgery itself can be another complication, though indirect, of the disease (just because all operations are not without their faults or impairments).
All NF2 patients have their own stories to tell, though, about how light or how severe their impairments are from the disease. In my case, I went deaf at age 18, I’ve had clear growths on my skin and clear masses form under my skin since I was a child. While I have mobility impairments and need walking aids, there are those in much worse shape than I am by way of the disease.
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$605 of $12k goal

Raised by 20 people in 6 months
Created February 10, 2016
All funds raised go directly to:
ADVOCURE NF2
  Certified Charity
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  Clearwater, FL
Tax ID: 263060389
How it Works
  1. You make a donation. Payments are processed by FirstGiving.
  2. Checks are issued. Once a month, a check will be sent directly to the charity.
  3. Charity receives money. The listed charity receives their check directly.
SA
$20
Stephanie Allain
2 months ago
1
1
$50
Debbie McDonald
3 months ago
1
1

Best wishes

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CB
$25
Cynthia Branch
3 months ago
1
1
$10
David Baldwin
3 months ago
1
1

Best of luck in your campaign, John. :-)

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$25
Anonymous
4 months ago
1
1
MR
$25
Marc Robinson
5 months ago
1
1
O
$50
OldDave
5 months ago
1
1
$5
Michael Pangilinan
5 months ago
1
1
JS
$5
Jonathon Staite
5 months ago
1
1

Awesome cause. All the best and thanks for all of your hard work!

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$20
Alexandra Ackerman
6 months ago
1
1
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