Well, another good day in Dean's Lab today. Man, just being around Dean and his clutter-free, focus-oriented office really makes for some productive work!
The AM was the hard part.
Today, I finally got up the nerve to watch some of Jonny Kennedy's series, "The Boy Whose Skin Fell Off," on youtube. I was afraid to watch it, even though I've known about it since Bella was born. With Bella, I never wanted to look ahead too far at older kids or adults with EB, because I just didn't want to face that future.
Well, last night, we came to the realization that a video that shows the problem, the solution, the results so far, AND a call to action was needed. Just about all the EB videos online share one thing: they raise EB awareness, but stop short of asking directly for a contribution. Now, I know not all EB videos online are designed to raise money. Many of them are specifically just for awareness, and that is VITAL, but so is asking to raise money. Advances in treatment come from research, and research costs money. So, we are going to make a video specifically designed to raise awareness, get people emotionally connected, and raise money. That way, when I do end up on TV and radio, all I have to do is say, "Please go to ebhope.com to help out." That's easy enough to remember. The person goes to that page (which currently points here to the blog but will be pointed at a fresh new page) and sees a big video screen and a donate button under it. That's it. Clean, clear, simple.
I was online this morning seeing what is already out there in the "youtube literature." There is one, two-minute segment I watched today from Jonny's show that made my blood freeze. I've only made it through 20% of his show, but it was so intense I had to stop. After watching his mum do bandage changes on him 36 YEARS AFTER HIS BIRTH... I couldn't contemplate it. My brain hurts now even. Many of us don't show the bad videos and the bad photos online, but the reality is that this disease is much worse than any of us show through video or photo. We may write about it, but most of us simply won't show you how bad it got for our little ones. In some ways, this leaves an inaccurate portrait of EB. Inaccurate because there is only so much we can imagine on our own. EB is worse than you imagine.
There was a scene of Jonny's bandage changes and it was worse than I could imagine. Seeing the video of Payton on "My Skin is Killing Me," seeing his torso and legs, hearing his screams getting in the bath... worse than I could imagine, and I'm an EB parent! Some diseases kill you from the inside out. EB kills from the outside in. It attacks the largest organ in the body. The two minute clip of Jonny's bandage change is more powerful than 100 great lectures, seminars, or speeches.
The good news was that the U of M has produced 4 really good, informative videos on this treatment. They don't hit as hard as Jonny's video; they are more upbeat and academic in nature. It was nice watching the U of M video knowing we're coming back this week.
Prepare! Prepare! The Ringgolds are returning!
I spent much of the evening coordinating our (social) itinerary today. The Minnesota Medical Foundation was nice enough to coordinate a meeting itinerary for our stay that is quite thorough. We feel so great working with them, they are a class act! The key for me is learning how to connect major donors with them and vice versa. That is going to play a big role in us raising such a big number. However, every role is important... remember... President Obama raised more money than any politician in history $5 at a time. His "Micro-donations" were completely revolutionary. It's hard to predict what movement or cause will "go viral" online, so it isn't yet duplicatable enough to control it, it just kind of happens. That's okay, we'll still do whatever it takes.
Okay, eyes are shutting involuntarily as I type. Time for bed. Tomorrow, I return to my family!
I can't wait to be with them again.