Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

The 2nd Annual Invisible Illness Benefit Concert Launch Day!

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Fundraisers, Invisible Illness, Memorable Experiences, Music, POTS Awareness, Thankful

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Dear friends, family, supporters, and fellow zebras,


After months, and days, and hours, and hours…and more hours of planning, we are finally ready to launch ticket sales for our 2nd Annual, “An Evening with Chris Trapper to Benefit Invisible Illness Research.”

There have been so many meetings.  So many triumphs.  So many acts of kindness and generosity.  So many emails.  And yes, even a few frustrations and tears along the way.  I have learned that just goes with the territory.

Last year, the dream was born for Allie and me.  The dream that we needed to do something…anything, to raise money for research for the invisible illnesses that we (and many others) live with each day; Ehlers-Danlos Syndrome & Dysautonomia (for me) and PAN Vasculitis (for Allie).

You can read all about how THE DREAM unfolded here.

Well, April 14, 2012 was a night I will never forget.  It was our first time hosting a benefit concert.  We had no clue what to expect.  We had no idea if many would show up.  We had no idea if we would even raise much money.  But we were ready to give it our best shot.

The night was magical.  Chris Trapper’s performance was beautiful; especially when he sang “Avalanche.”  Lisa Gigliotti’s motivational “Coraggio” talk was beyond inspirational.  Our silent auction was a major success.  We sold out of zebra t-shirts.  All of this was pretty unbelievable, but what stands out in my mind the most was the outpouring of love and support, both financially and emotionally from friends, family, Chris Trapper fans, Chris Trapper himself, and even strangers that filled the room at Lou and Harry’s that night.  It still makes me teary every time I think about it.

After all was said and done, Allie and I ended up raising more than $12,000.

We were brought to tears. We were emotional. Thankful. And we felt so incredibly loved.

It felt like we had just pulled off something way bigger than ourselves; something that would hopefully go on to help others who were facing similar struggles and adversity that both Allie and I knew all too well.  That night was an experience that really taught us that even though we are only two people on this ginormous earth, we really could still make some kind of difference in this crazy, mixed-up, beautiful world.

Needless to say, after that night, we were determined to make the benefit an annual event.  After our first benefit, a couple approached us as they were leaving.  They were Chris Trapper fans and had come for the concert after seeing it advertised on Lansing’s calendar of events.  This amazing couple told Allie and I that they were touched by our event, and if we were interested, they would “love to help us put it on next year at the Kellogg Center.”  It turned out that we were speaking with the director of the hospitality group at Michigan State University, and his wife who also does event planning.  We were amazed that these people who started out the night as strangers were offering us such an incredible opportunity for our second annual benefit.  I contacted them soon after the event, and quickly thereafter, I was at Kellogg signing the venue contract.

From there, planning took off in August and has been in full force ever since.

As we have worked to put together this year’s benefit, it has become even more of a labor of love.  It has become even more of a team effort.  It has become more personal, more special, and more important to Allie and me.  As the planning progressed, another dream was born.  I started to really take the encouragement from others seriously that I should turn Life as a Zebra into a non-profit organization.  There was so much more that we could do to benefit invisible illness research if we were an actual foundation, rather than a volunteer fundraiser for various charities.  I decided to go for it.  After some work, that dream also became a reality on November 8th, and we are now, officially, Life as a Zebra Foundation, dedicated to benefiting invisible illness research and awareness.

As I write, I need to make this clear.  This is not just Allie’s and my project.  This project has become a major team endeavor.  All of this could have never happened without the work, resources, and support of the people who have been working alongside us; either on the benefit or the foundation as a whole.  You all know who you are.  We are so blessed and grateful for all of you.

So, after many meetings and over 2,000 emails, we are at a point that we can now launch the foundation’s website, and therefore start publicly promoting our 2nd annual benefit concert.  We still have quite a bit of work ahead of us, but as of today, the venue has been secured, the entertainment has been secured, we have received some very generous sponsorships and donations, and we are ready to launch!

Before I put the website out there, here is a quick rundown of the event details:

What: Life as a Zebra Foundation Presents: The 2nd Annual, “An Evening with Acclaimed Singer-Songwriter, Chris Trapper, to Benefit Invisible Illness Research” (with special guest and opener; Joshua Davis Trio).  This is an all-ages event.

Proceeds will be donated to: Ehlers-Danlos National Foundation, National Dysautonomia Research Foundation, Vasculitis Foundation, and Life as a Zebra Foundation.

When: Saturday, April 13, 6PM-11 (6PM Doors, 6:30 Silent Auction & Cocktails, 8 PM Concert)

Where: Kellogg Hotel & Conference Center, Lincoln Room, & Auditorium, 219 S. Harrison Rd. East Lansing, MI 48823

Tickets: $40. The ticket price includes hosted beer and wine, light h’ordeurves, Joshua Davis Trio opener, and Chris Trapper concert.  Free parking will be available in the connected 1,000-space covered Kellogg Hotel & Conference Center parking garage. Tickets can be purchased in advance through our website or in person at the Greater Lansing Convention and Visitors Bureau (Monday-Friday 8:30-5:00).

So, without further adieu, here is our website for even more event info, tickets and donations, and overall information about Life as a Zebra Foundation!


Please, please, please help us spread the word!  We hope you can join us for an evening of  information, entertainment, awareness, and hope.  Allie and I thank you from the bottom of our hearts!

Lots of Love ~


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