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

We Have Launched!

Written by Katie. Posted in Foundation, Fundraisers, Invisible Illness, Music

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Dear Family, Friends, 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 3rd Annual, “An Evening with Chris Trapper and Tony Lucca to Benefit Invisible Illness Awareness and Research.”

There have been many meetings so far.  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.

Two years ago, 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 so many others) live with each day; Ehlers-Danlos Syndrome & Dysautonomia (for me) and PAN Vasculitis (for Allie). We also knew that was not enough for us. It was just as important to us to raise awareness for ALL invisible illnesses. There are so many people who live day in and day out, struggling in silence with their own illnesses that are not visible to the outside world. Many of these people are forced to constantly defend themselves and face adversity just because they do not “look” sick. It has become a passion of ours to bring attention to the fact that these illnesses are real, and can greatly affect a person’s quality of life. In simple terms it is our hope to help make the invisible, visible.

Enter Life as a Zebra Foundation.

To date, we have hosted two benefit concerts and have raised close to $40,000. We have communicated with hundreds of families and people living with their own invisible illnesses. We have created partnerships and have run awareness days.

There is SO much we want to do, but we have to constantly remind ourselves that it is all a process…a journey, not a destination. One step at a time…

I remember last year’s benefit concert like it was yesterday. It was a beautiful night full of so much support, hard work, incredible music, and LOVE. It was such a team effort, with so many people going above and beyond to make the night happen. At one point, I remember taking a step back, looking around, and taking it all in. All of these people were here to support a cause Allie and I have come to feel so passionately about. I was brought to tears. I felt so emotional…grateful…loved. That night served as an experience that really taught us that even though we are only two people on this ginormous earth, with the help and hard work of so many, we really could still make some kind of difference in this crazy, mixed-up, beautiful world.

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 1,000 emails, we are at a point that we can now launch the event information, and therefore start publicly promoting our 3rd 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 3rd Annual, “An Evening with Acclaimed Singer-Songwriters, Chris Trapper of the Push Stars and Tony Lucca as seen on NBC’s, The Voice to Benefit Invisible Illness Awareness and Research.” Our Emcee for the evening will be Evan Pinsonnault from WLNS News 6. This is an all-ages event.

Benefiting Charities: Ehlers-Danlos Syndrome Network C.A.R.E.S., National Dysautonomia Research Foundation, Vasculitis Foundation, and Life as a Zebra Foundation.

When: Saturday, April 12, 6PM-11 (6PM Doors, 6:30 Silent Auction & Cocktail Hour, 8 PM Concert)

Where: Kellogg Hotel & Conference Center, Big 10 Room A, & Auditorium, 219 S. Harrison Rd. East Lansing, MI 48823

Tickets: $50. The ticket price includes hosted beer and wine, light h’ordeurves, Tony Lucca 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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