June 25, 2017
mcfadyena
It is big times for MPS II Hunter Syndrome!
Trey ran in his third Scotiabank 5K today, surrounded by close family and friends. I often go into these events making sure everyone has their bibs, run shirts, sunscreen applied, and making sure everyone knows where to be and at what time etc. But once at the run, with a moment to spare, as I looked around at the people who STILL show up, 11-years into diagnosis, that’s the part that caught my throat in my chest. Because as times passes, other causes and events naturally come into peoples lives, so when people STILL show up despite pancreatic cancer, skull fractures, moving, job upheaval, aging, etc etc etc, that’s what hits the most.
And on top of all that, we raised $13,891!! THANK YOU THANK YOU THANK YOU to all of our donors. YOU raised us $13,891, almost $4,000 more than our goal!!!!! If you haven’t yet donated, it’s not too late, you can donate here: https://www.gifttool.com/athon/MyFundraisingPage?ID=2012&AID=3532&PID=606221
Joey Howell is also in town completing our part of his story in his documentary “Boys with Bigger Hearts”, a doc he began in 2011 about MPS II Hunter Syndrome that he hopes to complete and submit to film festivals this year. You can see the trailer here: http://boyswithbiggerhearts.org/boyswithbiggerhearts.org/Boys_With_Bigger_Hearts.html
In other news, Naikoon Contracting, the folks who built our house have approached us to put on an event to help us raise the $2.5 Million we need to fund gene therapy. Which blows me away. For the same reason as above, people have their own lives and things going on. To not only give us their time (without me even asking them), but to sponsor our event as well, is just plain incredible. If you are interested in being involved in a regular, a few hours every week kind of a way, let me know.
And last but not least, the mini-documentary series created to raise gene therapy funds are coming out one by one! If you haven’t seen the first one, you can see it here: https://www.youtube.com/watch?v=lW_v4vGFJ8o&feature=youtu.be
The second mini-doc is here, meet Noah: https://www.youtube.com/watch?v=pRVCGvhV0L0
Number three, four and five will come out in the next weeks.
Thank you for reading, thank you for your love and thank you most, for your continued support.
Deb
It is big times for MPS II Hunter Syndrome!
Trey ran in his third Scotiabank 5K today, surrounded by close family and friends. I often go into these events making sure everyone has their bibs, run shirts, sunscreen applied, and making sure everyone knows where to be and at what time etc. But once at the run, with a moment to spare, as I looked around at the people who STILL show up, 11-years into diagnosis, that’s the part that caught my throat in my chest. Because as times passes, other causes and events naturally come into peoples lives, so when people STILL show up despite pancreatic cancer, skull fractures, moving, job upheaval, aging, etc etc etc, that’s what hits the most.
And on top of all that, we raised $13,891!! THANK YOU THANK YOU THANK YOU to all of our donors. YOU raised us $13,891, almost $4,000 more than our goal!!!!! If you haven’t yet donated, it’s not too late, you can donate here: https://www.gifttool.com/