Thursday, August 23, 2012

Running for Ben 2011

As soon as we got Ben's diagnosis in June of 2011 I had a desire to do something...anything to help.
Dravet Syndrome is rare and under researched.  I had read that would set up a "Fund of Hope" in your child's name.  Once you raised $30,000 they would use that money to help fund a worthy research project.  I didn't know what kind of fundraiser I could do.  The thought was a bit overwhelming but then an idea came to me.  I contacted a very kind neighbor of mine who was on the organizing committee for a local race held each year.  I asked if we could use their race as a vehicle for our fundraiser.  I was surprised and quite relieved when he gave me the go ahead.

Matt and Ben with our banner

For a couple of weeks I went around to businesses in town and asked for donations of prizes for a raffle.
It was one of the hardest things I've ever done!  I was nervous to put myself so out there and vulnerable to rejection.  Some did reject me while others gave somewhat grudgingly or neutrally and there were just a few who were very gracious and even showed interest in Ben.  I have to mention by name Firehouse and Great Harvest.  Those two went above and beyond and were so kind.  (I try and support those two businesses as much as I can now :)

A friend of a friend, Tania Finn from (tk design), was extremely generous and donated her time and talent to design a logo for us.

My cousin's husband wrote a press release for us and we ended up in the paper!
We made stickers, fliers, t-shirts/tech shirts and a banner.
The idea was to buy a sticker for $2 and wear it during the race.  Each sticker purchased gave you a raffle ticket to put in any of the prize boxes.

 My other goal besides raising money was raising awareness.  That's where the fliers came in.  They had info about Ben and Dravet Syndrome as well as the logos of all the companies that donated.  We tried to talk to as many people as we could the night before the race when they came to pick up their packets.  This is also when they purchased stickers.  This was hard work as, for most of us, it was out of our comfort zone.
The next morning, the morning of the race, we continued to sell stickers until most of the runners had come in and then we drew the winners.

I had so many helpers from the very beginning.  From the people that babysat my kids so I could go around to businesses to the designer to all the volunteers who came and helped during the actual fundraiser and most of all my family...immediate and extended.  I was so grateful for everyone who was willing to help!

I actually was running the 1/2 marathon so Andy took pictures of the kids (especially Josh) running laps around our backyard in support of the fundraiser.  It was precious :)

This is not the greatest picture: post race at our booth with Abby's black eye and most of us not looking at the camera, but it's the best we got.

There are actually two races associated with the "Top of Utah".  So when we got done with the 1/2 in August, we turned around and did it all again 3 weeks later for the full marathon.

I saw Sherri Dew among the spectators and grabbed her for a picture.

 With those two events, along with spending 8 hours on a Saturday in front of a grocery store asking for donations, we raised right around $5,000.  I was quite pleased.  I hadn't known what to expect but I was happy with the outcome.  (Later I found out about a family that has been able to raise $30,000 at one event!...but that's okay...I was still happy with what we were able to accomplish :) featured us in their newsletter here.

I'd say the best part of this experience was connecting with other people.  Everyone has a story.  We met many people who were in one way or another linked with epilepsy.
And something that was driven home to me the day at the grocery store is that you can't judge a book by it's cover.  People that we would never expect to donate to our cause were some of the most generous...often, again, there was some story or connection with epilepsy in general.

I learned so much about so many things from the whole experience.
There was a lot of follow up, loose ends and thank yous to be written during the couple of months afterward but it was all worth it.  So many generous people made it a very positive experience.
The question is, can I do this for the next 5 years to raise the amount we committed to?
We'll see :)
The nice thing is that there's no deadline.  We can take as long as we need.
The sooner the better though...time is ticking for our little Ben.


  1. I have watched you do all of this in awe, Aimee.
    We are geared up and ready to go at it again tomorrow.
    What a very precious picture of you and Ben!

  2. I had no idea the amount of work you did for this. Why am I NOT on your radar for babysitting or food? I suppose that is my fault. Please call me if you need help. I am even willing to bug businesses for you!

  3. I would LOVE to donate to your most worthy cause. Your boy is so precious and I know about under-researched. My DH just passed away from a glioblastoma, a brain tumor that affects 1% of the population and is also under-researched/funded. If you'll let me know where to send the check, I'll do so ASAP.

  4. We are all in awe of you and so glad when we get to participate in our own little way.