I received an email last night (yay!) and I'd like to address it here! Thank you for helping me understand some concerns about our charity of choice and please let me explain:
There was a lot of consideration when we first had the idea to try to pull this race off. We spoke with both 22q.org (Sheila) and the Dempster Family Foundation (Michelle). My first instinct was to go with the DFF and please let me explain why. Eighty years ago, no one had ever heard of ALS, although it was around and killing young men and women in their prime. Then one day, a young Yankee named Lou Gehrig announced that he could no longer play baseball because ALS was robbing him of his ability to function. Suddenly, everyone had heard of Lou Gehrig's Disease. While this disorder that is affecting our loved ones will never carry a moniker like that, i do believe that it helps to have a recognizable name to something that is considered rare - it makes it relatable to people; 'oh look, so-and-so's child has it too!'. (Many other charities have names lent from athletes or famous people - It seems that in order to bring in funding to a cause, it needs to be associated with someone the public recognizes)
This is an event that we are hoping to do annually, and the DFF offered to partner with us and help create the platform to do the fundraising. Due to it being the first year and not knowing what to expect from fundraising, we thought it would be more beneficial to donate whatever was raised to the DFF, since their mission is awareness and education focused. If we can have success this year, which is only possible with the support of the 22q community coming together and recognizing that all organizations out there have the same intention of helping the 22q community as a whole, then we fully intend on involving more organizations in the future races.
As i mentioned, we have spoken with 22q.org, and they completely understand and are supportive of us donating to the DFF. And they also know that if we can make this a successful race this year, we hope to expand upon it next year. The Dempster Family Foundation is one of the leading donors/contributors to 22q.org, so in effect, they will see a benefit from the monies we raise.
(Please remember that we are only parents of children with 22q on a mission to raise awareness and provide assistance for families like ours - in no way are we professionals ;) we have received no financial assistance in pulling this together - i paid the team's $1600 registration fee personally and we've all been asking friends and family to help us foot the bill for van rental, gas, and equipment, in addition to the official fundraising we're doing, so that all of money received from families like yours goes directly to helping families like yours!)
Also, if you have time, please consider checking out all of the educational materials on the Dempster Family Foundation website; if you haven't already, i think you might be pleasantly surprised to see what they offer in terms of webinars and publications.
All of this being said, if you still feel adamantly about your donation going to the international 22q foundation instead, by all means, please donate there. Give us a shout out (and some way of knowing that a donation has been made) and we'll be more than happy to include your loved one on our journey. The truth is, we want to bring 22q awareness more than anything and there are so many good charities out there. If you are in Australia, donate to VCFSFA; in the United Kingdom, try Max Appeal, etc. Just let us know you donated and we'll be happy to carry your q-t along! We strongly believe in the Dempster Family Foundation and so they'll continue to be our charity of choice!
https://app.mobilecause.com/vf/22qRun
Please keep your feedback coming! It truly helps to make this successful, which is all any of us should want as we continue our mission to spread awareness and hope.
Katie Chiet, Chase's mom and team captain #werun22q
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