Isaac's Review - Shadow Days
Hey Everyone,
Isaac, Gabriel and I are sitting at Sick Kids Hospital as Isaac receives his weekly enzyme infusion for his condition, MPS VI. The Smurfs Movie is playing on the TV above us, and both boys are playing around on the computer and waiting for lunch to arrive. We’ve had a nice day together, and I’m glad I’ve had the chance to be at Isaac’s treatments a few times while I’ve been off on medical leave from work.
For what it’s worth, I thought I would post Isaac’s quick review of John Mayers new song, Shadow Days. The boys heard it for the first time yesterday. After a few plays, the jury was in. In Isaac’s words, “I love it! He IS a good man with a good heart! But…what are Shadow Days?” Really Cute. We had a long talk about growing up, about making mistakes and learning from the mistakes you make. And about saying things that you don’t really mean and learning to be honest with people. Isaac seemed to understand. His response? “So…kinda like when Gabe says he isn’t going to play with me anymore! He learns that he doesn’t mean it and plays with me again later.”
In many senses, he’s bang on. We all say and do things we don’t mean, we learn from them, and move on. And even when you’re finding your way through life, knowing that you have always stayed true to your loving values is comforting. You always go back to play with the ones you love. Life lessons from Isaac McFadyen, once again.
For the record, we’ve been saying John is a good man , with a good heart, for a long time. He once told us that “we’ll figure out” Isaac’s disease, and we’ll hold him to it. Those words gave us hope years ago, they give us hope now. John’s always had a good heart, we’re glad he’s singing about it now.
Oh…Gabe’s review was short, sweet, and to the point. “The new song is great!”
Take Care for now,
A.
Today is International MPS Awareness Day!!!
In that spirit, we would like to announce that The JM Fan Street Team** is sponsoring the McFadyens in their “Run For Isaac” event later this month.
Their goal is to raise $500 during Ottawa Race Weekend (May 25th-26th), and so far our group has sent them $50 from members like you!
We would love to send them a whole lot more!! If anyone would like to join our efforts to sponsor them, please send whatever amount you can afford to us via PayPal, and we will send it over to them!!
Our email is fanstreetteam@verizon.net. We will happily take whatever you send, whether it’s $3, $5, $10, or $100 - every little bit will help!! When we donate our totals on behalf of the JMFST, we will let them know first names only of all who contributed (but not individual donation amounts).
If you prefer to sponsor them directly, and not through the JMFST, here is the link to do so!
http://www.gifttool.com/athon/MyFundraisingPage?ID=2012&AID=2345&PID=353559
The McFadyens have only raised 15% of their goal so far, and the Run for Isaac is only 10 days away!!!! Let’s fix that, folks!!!
**Disclaimer: We are only FANS of John Mayer and The Isaac Foundation, and we are NOT formally affiliated with either. We are not John’s official street team, and John Mayer is not involved in our activities in any way. John does not donate any merchandise or money to us. Everything we raise for The Isaac Foundation comes from generous John Mayer fans!!
2 More Days! @isaacfoundation #ProjectOneMillion
Only two days left to sponsor the McFadyens in their “Run For Isaac!” event this weekend!
We’re happy to report that the run team has already collected almost 200% of their goal, and the Street Team is responsible for raising about a third of that for them!!! Go TEAM!!!
As of today, we have raised $330 in sponsorship money for Team Isaac, and we hope that we can bring in another $45 today and tomorrow to help the McFadyens top their total off to an even $1,000.
To sponsor the team for ANY amount, go to:
http://www.gifttool.com/athon/MyFundraisingPage?ID=2012&AID=2345&PID=353559
Thanks to all who contributed to this blitz, bringing our grand total raised for “Project One Million” to a whopping $3,339 so far!!!
Here’s what Isaac and Gabe have to say about the Street Team:
**Disclaimer: We are only FANS of John Mayer and The Isaac Foundation, and we are NOT formally affiliated with either. We are not John’s official street team, and John Mayer is not involved in our activities in any way. John does not donate any merchandise or money to us. Everything we raise for The Isaac Foundation comes from generous John Mayer fans!!
Andrew Queen Supports The Isaac Foundation!
Hey Everyone,
Quick update today - we’ve been so busy getting tax receipts out and setting up our online information for our RUN FOR ISAAC! event that we’ve neglected to update our blog and website regularly. However, I’ve carved out a few minutes to send a huge thank you to Andrew Queen and his lovely family for their generous support of our son and our charity.
Over the past few years, I’ve had the opportunity to introduce some incredible performers to the stage as they have donated their time and talent to helping us find a cure for Isaac - Ron Sexsmith and Sarah Harmer, to name a few. On the Family Day holiday this past Monday, I was thrilled to be a part of Andrew Queen’s album release party. Andrew is a talented children’s entertainer, and an accomplished one at that after he received a Canadian Folk Music Award last year. His latest album, GROW, is a collection of music dedicated to eating locally and supporting family farms. In the spirit of celebrating all things local, Andrew approached us and asked if he could donate the profits from his album release party to our organization!
Andrew, his wife Karen, and their band looked after all the arrangements for the concert, which was held at the Aron Co-operative in Campbellford. Seating capacity is 180 people. While we didn’t know what to expect, we hoped for a crowd of 80 to 100 people. However, the show was packed - standing room only, with an estimate of 200 people in attendance to watch Andrew and his band deliver a fantastic show.
We’re thrilled to announce that Andrew’s concert raised over $1000 for The Isaac Foundation! Please take a moment to search for Andrew on iTunes to download his latest album. You can find him on Facebook to send a THANK YOU here. And finally - please download this FREE SONG from Andrew’s album. Your kids will LOVE IT!
Thanks, as always, for your support.
A.
Help Find A Cure for Isaac and all his friends with MPS. Sponsor Run For Isaac!
gifttool.com#MPS #FINDACURE #HOPE
Isaac and his family are participating in an Ottawa Race weekend May 25 & May 26 to raise awareness and money to find a cure for MPS. Please consider sponsoring them! Thank you!
Logo Designer
Hi All,
I’ll put more information up on our website after our redesign is done, but I wanted to direct you over to http://www.kolbisneat.com/ so you can have a look at the work of the guy that designed our new logo(s).
Andrew Kolb pitched in, at the last minute without any notice, to get our logo looked after for our new merchandise. Please drop over to his site to have a look, drop a note of thanks…whatever you want. We appreciate the work he’s done for us and want to send his name out to whomever is listening or reading (please tell me people are listening and/or reading!)
If you’re one of our tweeps, drop in on his Twitter page - @kolbisneat
We continue to be amazed by the people putting their skills and talents to use to help us find a cure for Isaac. Thanks, Andrew. This means a lot to us, our charity, and Isaac!
Many thanks,
A.
You Can Help
canadahelps.orgIsaac is one of millions of children with rare diseases. There is no treatment or cure for his condition and drug companies refuse to fund research for treatment of the disease because it is so uncommon. Sharing his story with the world is The Isaac Foundation’s goal, raising awareness and hopefully inspiring everyone to donate even the smallest of donations so that a cure might be found not just for this precious little boy but for all the children like him who need our help and support.
Another ask for help, for Isaac.
There’s going to be an attempt to get some coverage via twitter today for Isaac. This is the little boy that I ran for last weekend. In case you’re new here, he was born with a rare disease (MPS VI) and we’re working towards raising awareness and funds for new research.
He’s a great kid, and they’re a wonderful family. Please take some time at 10am today to tweet #ProjectOneMillion. Watch the video and please share as much as you can.
Thank you for your time, and your help.
