Monday, November 29, 2010

November 28: The Alien has taken over...


Well, it's official, the alien has taken over.  I found myself at the top of a second mountain in two days... now when I say 'mountain,' I exaggerate a little, the summit trails at Camelback Mountain and Piestewa Peak are only about 1,200 feat up, but hey, I lived in Phoenix for 9 years and one ascended each summit once, and it was definitely NOT in back to back days!  I'm hooked on exercise again!  I used to exercise regularly, but after Bella was born, I found it more and more challenging to do so, and once we got to MN, I just couldn't get the motivation to do it.  Now, I feel like honoring Bella by being in the best shape I can be in... not because I 'should' or 'have to,' but simply because I have the opportunity to.  Bella's death has refocused my life; my days could be expendable, but who knows how many of them I really have?  So, now, I don't waste a day.  This morning, I brought my drums to the peak of Camelback Mountain and we started a drum circle on the top of the mountain.  We had 9 people drumming together at one point!   Can you imagine how cool that must have sounded to those people near the summit?

The jam in session...

I brought Ali and Bella with me to the summit... Ali gave me the picture she colored in for my trip!

My dear friend Jim and his girlfriend Amy...

Providence Story of the Day...

After our morning hike, I took a trip to my favorite Sunday spot in Phoenix: La Grande Orange.  It's a funky little market/restaurant that makes the best croque madame ever.  I eat there maybe once a year, and it always makes me happy!  Well, anyway, after my lunch I headed across the street to my car.  As I looked back at the restaurant from across the street, a kindly gentleman was handing some money to a homeless man. I looked a little closer, and said, "Is that Tom Hoover?"  Tom Hoover was my coach in an incredibly rigorous 7 month leadership training course I took at Landmark Education called the Introduction Leaders Program back in 2002-2003.  I became trained to lead an interactive, 3 hour workshop as a volunteer to share the principles of their main seminar: the Landmark Forum.

Anyhow, I haven't seen or talked to Tom since I moved to CA in 2004, and as soon as I saw him, a little voice went off in my head.  It said, "Tim, remember?  Tom is involved in a lot of community projects!  You need to go talk to him RIGHT NOW."  So, having learned to listen to THAT voice, I turned away from my car, and headed back across the street.  Sure enough, it was Tom, and I gave him a big hug and we started to catch up.  Then Theresa Gonzales, one of the staff members at the Phoenix Landmark Center, walked up.  I hadn't seen Theresa since I moved either, so suddenly it was a mini reunion!

I started catching them up on life since moving to CA, and they both knew from different sources about Bella, and so we started talking about her story.  When I told them that I am COMMITTED to raising the $1, 050,000.00 for Drs Tolar and Wagner to finish this research and find a cure for EB, Theresa looked at Tom, and Tom looked at me and said quite matter of factly, "That's not a lot of money to raise. We can do that easily."  Theresa then added, "You know Tom is the master at fundraising for non-profits, right?"  I knew he was involved in the community, but I never knew to what extent.  Turns out Tom is an expert in raising LARGE sums of money for good causes.  He IMMEDIATELY started to break down how to do it.  Then, he added, "Just to give you a little back story on me, I contracted polio when I was 2.  My dad was somehow asked to be part of a fledgling group called The March of Dimes to raise money for research for a cure, and he raised $50,000 in less than a year (this is going back to 1955), and in that same year, Dr. Jonas Salk discovered the cure for it."  (Editor's note... I am trying to quote Tom as best I can, and I think I got the story right.  The March of Dimes at the time had another word in front of it that Tom mentioned and I can't remember it.)

The three of us spent the next 3 HOURS brainstorming ideas and when we left, we were all filled with energy and inspiration.  We have MULTIPLE STRATEGIES now to raise some serious cash for the docs.

These strategies involve YOU.

Yes, YOU.

Yes, I mean YOU, too.

Even YOU.

Here's the deal, every single day, around 1,500 of you read this blog.  THAT is amazing.  Why?  because if each one of you PLEDGED to raise $1,000 for this cure, WE WOULD HAVE $1,500,000.00 to complete the research needed to isolate and identify the specific stem cell that is causing this BREAKTHROUGH.

Do you think you (yes you) know 10 people that would donate $100 to find a cure for EB?  What's better, they will be funding the treatment of OVER 400 DIFFERENT SKIN DISEASES with their $100.

Think that's a good investment?

Do you see how EASY that is?

There are 10 people in your life that would give you $100 in a moment's notice if you really needed it.

When was the last time you could tell someone exactly where and how their $100 donation would be spent, and to what good would come of it?

Folks, it's that simple.  Plus, it's actually more than the docs asked for.

Our friend Sara raised $4,500 for the CHOC walk for Team Bella.  Think you could raise $1000?  How bout if I gave you till Bella's birthday:  May 27.  6 months.  Think you could raise $1,000 in 6 months?

I tell you this:  I could raise $1000 in 6 weeks.  I could raise ten times that probably.  How do I know?  I already have.  With just the little button on this blog, combined with what I raised at the conference in LA, we have already raised over $11,000.00 in 6 weeks in honor of Bella.  I don't share that to toot my horn, I share it to say that despite what anyone says about the economy, the time of year, or any other circumstance, $11,000 has already found its way here, which means, IT IS POSSIBLE.

Now, the reality is that 1,500 people will not answer this call.

That's okay, too.

So, those of you who DO...

What are YOU willing to raise?  You know people I will never reach with this blog.

Here's what I challenge you to do:

send me an email at, and say: I'M IN!  Then, sign it with:



So, your email would read:

Dear Tim,



Jane Smith

Got it?

Then, once I amass this list of members of TEAM BELLA, I will start emailing you once a month with some personalized strategies and motivation and inspirational stories to keep you focused on your pledge.

We will also have conference calls that will be recorded monthly where we can get on the line together and share our successes and our challenges.

Now, it's Monday morning, and you are probably starting or ending your day by reading this.  JUMP ON THIS.  Right now.  SERIOUSLY!  Send out this blog address with a CALL TO ACTION to your email list, post it on your facebook page (again), tweet this on your twitter page, call 2 people you know TODAY, heck, call and email Oprah! Share with them this game.

How would you like to be part of a cure?

Life is a lot more fun when it is about more than myself.  How 'bout you?

Has Bella inspired you?  Taught you a lesson or two?  Many of you have said she has changed your life in some way.  Here's how to pay her back, and pay it forward at the same time.  Let's make sure that in the very near future, no other EB child has to follow her steps to heaven so quickly.

I have already given my word to Tom and Theresa that I will text them with just one word:


God night, indeed.


  1. May God continue to bless and guide you and your beautiful family...

    Great pics...


    Donna in NJ

  2. Loved your story. I'm struggling to say "in" when I'm suposse to be raising money for another charity in Argentina. I'm a teacher, I don't know how to make money! But it does sound so easy...
    Praying for inspiration and decision.

  3. Man do I wish an alien would take over my body LOL! Maybe I should make that a new vision for myself! :)

    I applaud you for all you are doing for raising money for EB. Nobody would blame you for being "angry" with the doctors, etc., and you are doing everything possible to find a cure! You are one amazing man, friend, husband, visionary, and most importantly, FATHER! Bella would be so proud of you.

    I just watched the video you uploaded to Facebook. You are such a powerful speaker. I was in tears most of the time, because I could see the pain in your eyes and how much you miss your sweet baby girl! And boy do I miss her too!!!

    Your pictures of the alien abduction are gorgeous...

    Love today's picture of Ali and Bella!

    As always, thanks for sharing!

    Megan from WV

  4. You have me crying my eyes out because I wish I could be a part of the fundraising right now.
    I am in no place at the moment, I have just been hit with random seizures with unknown cause, which has cost me my job, driving privlidges, and everything I have ever known. I am struggeling to keep my faith right now as I had to take my 2 youngest sons and move in with my mom, 4 hours away from my husband and other kids. My mom is helping me cope, but they have very little, 5 of us are now in a small 2 bedroom home, with 1 person who can find a job. My health is poor and I am sad. Everyone that I could ask to help is trying to help me right now... I am so sorry.
    My husband is struggeling through law school, and we will prevail! When he does we will be there to give back, give back to the community who is supporting us know, and to causes like you who touch my heart.

  5. i have no idea how to do it, maybe you could post some ideas?

    and...i've been wondering all the time, even before bella was in the trial and before she left us: what if the doctors in mn are not going in the right direction? wouldn't it be better not to give all the money to the same study but to other studies as well? like the one in california or to this doctor from the uk who visited while you where in mn.
    I am just thinking out loud here, i'm sure you have checked all the options...but i too would so love to see a cure has been found, and "putting all the eggs in the same basket" has never been a good idea.
    EB is so cruel. Doing nothing is bad, doing the transplant is bad.
    well, just wanted to let you know about my doubts. maybe some others feel the same way too.
    i hope people don't "attack" me for sharing these feelings...

    I would love to receive ideas about how to raise the money.


  6. Great pictures Tim. Looks like you had a beautiful hike!! I love the Drum session too!!

    I would love to help raise money in Bella's name for EB research but, I don't put a lot of faith in my abilities. Unfortunately, I don't have the confidence to be able to do it...or at least make a huge pledge. I did a brain cancer walk for my sister and I was only able to raise like $120! Are you going to set up a system where I can email people or post something on my facebook with a link for them to make a paypal or credit card donation? That would really help. Then you can put a chart online that shows our goal and where we are at at any given moment. That will offer further inspiration.

    I love the pic of Ali and Bella "chillin"!!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(11 mos.)
    The McLaughlin Family
    Moreno Valley, CA

  7. I just thought of something...I bought a sewing machine about a year ago with the intentions of making things to sell for extra money. I can use raising money for EB as my inspiration to get going. I can not only make extra money for my family but, also raise money for EB research. Okay, I think I can do this!! Now I just need to think of things to make and how to sell them!! hehehe...but you've got me thinking Tim, and that is a start!!

    Lots of Love,
    Amber McLaughlin, CA

  8. Tim,

    Just a quick question: are you raising money separately from PUCK? Maybe you've explained that already and I missed it.

    Your answer doesn't affect my willingness to help, just clarifies it a little!

    Karen Steiner
    Denver, CO

  9. O.K...This is going to be wordy...

    A lot of people are thinking they can't raise the money. I didn't think I would raise the money for CHOC.

    Start small.
    1- Email your friends & family WHY Bella means so much to you. Add her picture to the email.
    Ask them to consider even $5.00. At the least, challenge them to read Tim's blog and try NOT to be inspired :) Ask them to pass it on to 5 more people.
    2- post in on your facebook
    3- do you have a blog? Add Bella's book to your sidebar. Blog about her. A lot. Add pictures.
    4-ask for a P.U.C.K donation instead of a Christmas present this year. We draw names in my family. On my "wish list" was a donation in Bella's name...
    5- have kids in Boy Scouts? Girl scouts? Have a car wash...have a rummage sale at church.
    6- do you have a home business? Donate a % of sales to P.U.C.K...I JUST started an etsy site...and just updated to donate 10% of sales to P.U.C.K...
    (shameless plug= here:

    I told Tim, that his song about the Ripples in the Pond are SO true. You never know how far you can get, unless you throw that first stone. However, you have to know WHERE to throw it.
    If you throw in mud, no ripples.
    Dig deep, think about the "water" around you.
    Where would the ripples be the strongest?
    Start there.

  10. and, Tim...just so you know...I HAVE written the Ellen Show about Bella several times!
    No joke.
    She's cooler than Oprah, and Oprah is almost done with her show!

  11. Third time trying to get this to post...each comment is getting shorter. :)

    I too like some of the others lack the confidence to say yes I will raise 1000. I would be more comfortable saying 100-200. I also hate to fail. I dont want to let you, Bella or myself down. So yes I am in (I will pop you an email tomorrow) but I have to determine how much and how I am going to do this. I do it for all "my" EB babies...Bella, Elle, Daylon, Tripp and Jonah and for those that I havent "met". I dont know if you really know what you are asking of me. I already have a knot in my stomach thinking about having to "break out of my shell" (I know it will be good for me). I would do just about anything for you and your family...for Bella.

    I love tonights picture of Ali and Bella. It is just so very warm...with the light and the background.

    Sending my love to all and sweet kisses to Ali.

    Denise WI

  12. I feel bad in saying this but not all of us can afford to help out. I am the only person in my family of 5 that is working right now. I wish I could do more, but money seems to be your main focus right now and I can't help that way.
    perhaps you could think of another way for people to feel they are helping besides the whole money situation, which suddenly this blog feels very focused about.