Friday, January 28, 2011

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



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 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 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.


  1. Hi Tim!
    For some reason last night, I felt like I needed to pray for you and the people you were traveling with... so it was interesting to dial up your blog this morning and hear that the trip was canceled. Sounds like it was the best thing to do- and I will continue to pray for the safety of all in Egypt!

    Love to your beautiful family. :)


  2. Gods richest blessings on you Tim.There will be a cure for EB thanks to Bella and all the little ones gone before her.Safe travels,you are doing a great job

  3. I am happy you are safe and soon back with your family...

    May God continue to guide you...Donna in NJ

  4. Good morning! So happy to hear you are safe and sound! Thanks for the update on fb, it was intriguing to fond out a new update every time I logged on!

    I read those anonymous comments and there is so much I would like to say but won't .... I don't know if those people have ever met you, Ang, Ali, or sweet Bella... But I have a feeling if they had shared the love and the sorrow and the pain in person, they would not have to say those things.

    So excited that you have made these amazing connections... and we are doing our small part here as well! Can't wait to see you guys next week!

    Great photo of sweet Bella , I wish I could kiss her.

    Praying for you and Ang and Ali at home too.

    Just think, Bella is looking down at her parents and so proud of them for doing everything they can so other kids never have to suffer . She is smiling down at you saying I love you!

    Much love,
    Amanda Schauer

  5. Tim,
    1st I am so glad you are all safe and will keep the other folks in my prayers. So glad the storm hit and you did not make out with the turn of events!

    I am glad you are finding more and more folks to brainstorm with and get ideas and pathways opened with! You are right - if you don't cover all the financial avenues it really won't happen! Smart ot reach out as far and wide as you can and to do exactly what is needed!

    GO FOR IT! I am behind you and finding a cure!

    Tina in NJ

  6. Peace be with you, Tim.
    Amarillo, Texas

  7. As always, your angel Bella is watching over you! Keeping you safe. I'll be praying for your friends and hoping they make it home safely too.

  8. You are exactly where you need to be...

    I'm keeping Joe's friends in my prayers, the news from Egypt this evening seems to be better...keeping my fingers crossed that the military supports the protestors, and not the government...

    I was thinking the other day...Oprah and Ellen...some of the biggest audiences you can get, two classy women...what do you think??

    I can't wait to see you on tv! Blessings and safe seeing pics of happy Little Miss!

  9. I am glad you are doing what you are doing. I hate that children and babies have to live with this disease.

    you have my support to continue doing what you are doing, and trying to reach an ever larger audience. :-)

    still loving all the pictures.

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  11. The path you have been placed on has left me amazed. I love watching it all unfold before my eyes and seeing where God is at work. I can see why you were "choosen" to be Bellas daddy. Not everyone can do what you (and Ang too) do.

    Always loving the picture of Bella.

    Thinking of you and wishing you continued safe travels. I hope all is well at home with Ang and Ali.

    Sending my love to all and sweet kisses to Ali.

    Denise WI

  12. Tim,

    I'm not great at staying up to speed on current events, but it's hard to miss the conflicts in Egypt right now. I'm sure it would have been an amazing trip; hopefully the opportunity comes again.

    For now, though, I'm glad you were stranded on a snowy plane in NY! It's all part of the plan for you, so I'm sure we'll soon understand why this "trip" was cut short. Maybe NY was the ultimate destination all along!

    I'm sure your girls we'll be so glad to get you back, safe and sound!

    Safe travels,

    Karen Steiner
    Denver, CO

  13. What an amazing man you are Tim. I don't think I could spend all those hours stuck on the tarmac and then spend the night in the airport and still have such a great attitude. You truly are inspiring. I am so sorry to hear about Joes friends in Egypt. They are in my prayers. I'm glad you guys are safe.

    Lots of Love,
    Amber, Craig, Malorie, and Liam
    The McLaughlin Family, CA

  14. SO GLAD you did not fly to Egypt. So glad you are safe to continue on your journey.

    I have no doubt you will succeed.

    Seriously Tim. Seriously.....ignore and move on. The .000001 % of people who don't support you don't deserve your energy.

    We have your back.
    Big hugs to you and Team Bella!!