January 27, 2011: New York, New York...

Heaveno!

Wow.

What a 24 hours. I am beat. First of all, if you haven't read on FB, we cancelled our trip to Egypt. All the news coming out of Egypt is getting worse by the minute. We are really concerned for the safety of Joe's dear friends. The internet is down as is SMS texting, blackberry internet... all blocked by the government. This is really scary. We are beyond lucky. The snowstorm that let 2 other planes out just before us, but NOT US, is my Providence Story of the Day.



After sitting on the tarmack for 2 hours, they postponed the flight till 2pm today (not that we were getting back on it). It was 1:00 am, the airport was closed, and all transit to and from the airport was shut down do to the snowstorm, so we were forced to hunker down and sleep in the airport! We went back on the plane to get blankets and pillows, snacks, and water, and someone found the cot storage room, so we all slept (more or less) on the floor in the terminal on cots a la disaster or homeless shelter. There was an Egyptian mom and grandma on the flight with the mom's twin babies, who couldn't have been more than 2 months old. My favorite part of the night was bringing blankets, pillows, and a cot to them, not being able to share a word between us, but able to share a smile, and a warm set of eye contact. I'll never forget the look of gratitude on the grandma's face when I just walked up to her with the blanket and pillow and just sat it next to her and smiled. Giving rocks.




In the morning, we had to 'liberate' my bag from the plane. Easier said than done. First, the plane was literally covered in snow and ice, and the grounds had to be plowed around the plane just to get a ramp to it. Then they had to take out the canister than had my bag in it, open up the canister, find my bag, and send just my bag through baggage claim, repack the canister and reload it back on the plane. No big deal except for the blizzard cold and ice conditions the workers had to do this in. Everyone we dealt with was amazing. Evelyn at the baggage claim counter couldn't have been nicer. Well done, Delta, thank you.





With my bag liberated (by 11:30 am) we got a taxi back into Manhattan and scored an AMAZING deal on hotels.com. Double room at a midtown hotel for $93. Practically unheard of in Manhattan! We hunkered down for some much needed sleep.

Joe, being the eternal networker that he is, set up dinner for 8 of us at the greek restaurant across the street. Ken and Jeffrey joined us again, and tonight we were joined by Eben Pagan and his fiance, Annie, Marie Forleo and her fiance Josh, and Steve Krein. Once again, Joe asked me to speak to the table and share my story. After, we spent literally (on and off) a couple of hours between Ken, Steve, Jeffrey, and Marie brainstorming ideas for how to reach our goal. We came up with a couple of really good strategies that I am excited to begin working on. All offered their help, their connections, and their experience.

I asked them for their advice, and for their connections. One thing we have identified for sure: I need to get on TV and radio. We also need to spread the video from Joe's event out, and also create a new video when I go to MN next week that has Dr. Wagner and Tolar talking about the need for this funding. We'll make a compelling video on ebhope.com and have the donate button right underneath it, and THAT is where we will drive all our traffic going forward once the video is made.

There are three levels of this campaign, the grass roots level, the online viral level, and the major gift level. They are very different things with very different rules of engagement. I know we need lots of levels of contribution to make this happen. It's going to happen $5, $20, $100 at a time, AND it's going to happen $10,000, $100,000, and maybe even $1,000,000 at a time. That's how it works raising money at this level for a cure. It takes a little more relationship building at the third level before anyone is going to part with 5, 6, or 7 figures.

And yes, the way money is earned is out of other people's pockets. I'm struck by that comment. Where else does it come from? You provide value, someone provides money in exchange for that value. The value may come in the form of products, services, or information. I have PSI (product, service, or information) that I want to sell to you. You find it to be a match to what you want or need, and I give it to you in exchange for money. Your pocket to mine.

I don't mind people asking questions, but please, keep your comments positive on this blog. My daughter paid with her life to try to find a cure to EB. This is not pie in the sky stuff, folks. This is how it gets done. So, while I am out traveling to wherever it takes to enroll the critical mass of major players and you are sitting at home reading about it, if you don't have anything positive to say about it, well... you know how the saying goes.

Thank you to the rest of you for your unending support. Remember, by October 11, 2020, there are various forms of treatment for EB, and no child ever has to die from this again.

God night.