Still Miles to Go

Once you choose hope, anything’s possible. -Christopher Reeve

Four months ago I got my muscle biopsy results. It showed severe deficiencies and came with the official diagnosis of Mitochondrial Disease. Although I had lived over a year with a “clinical diagnosis,” it had suddenly become real. Really real. I found myself at a crossroad: I could breakdown and cry; or, I could do something about it.

That night I spoke with my best friend and expressed how I felt. Less than a year earlier, she had had the same conversation with her physicians. She heard those same words: “You have mitochondrial disease.” She felt the reality come over herself. And she chose to fight back.

We spoke for a long time about what we could do. How we could change the future. How we could keep this horrible disease from consuming our every wish and dream. Our every hope.

It was on that night that the Show of Hope was first conceived.

We started reaching out to musician friends. Our first contact was with the always lovely Liz Longley. Liz is a multi-talented folk artist with numerous awards under her belt. Soon after we asked, Liz got back to us with an overwhelming YES! Next, we contacted the local musicians of Air Traffic Controller. We loved their music and they had just recently won the 2010 Boston Music Conference, less than a year after they released their debut album. Within days, Dave (the founder and lead singer/guitarist) and their manager “JoeG” had responded: “Let’s do this.” The final task? To convince my incredibly talented best friend to open for these artists. Although slightly intimidated, Stefani agreed.

Our next task was to build our team. We knew it would be made up of people directly affected by mito, people indirectly affected, and people not affected at all. We brought in the mother of the young girl I tutor as she has experience in planning events and has wanted to help out for ages. The artists of ATC, Liz, and JoeG have been instrumental (pun intended!) in getting this project off the ground. I reached out to my dear friend, Aimee, to help design the logo for the event. She did not disappoint! Finally, we found a friend in the manager of the Lowell Memorial Auditorium. Without him, we’re not sure the project would have been possible. With his help, we were able to secure the LMA and related services for the event with discounted costs. Yep, it was really happening.

With all this support, we went to the United Mitochondrial Disease Foundation. We decided, early on, that we wanted all proceeds to be donated to this wonderful organization. The response was overwhelming excitement.

Now it was time to start spreading the word. I began building the event website the minute we heard back from the UMDF. Although it took longer than I had hoped (thanks to my friend mito), it is finally complete and ready to share with the world. I don’t know if I can express how healing this whole project has been for not only me, but also Keith. I went to a dark place after my diagnosis and I credit this event in saving me. So…without further ado, we invite you to show your hope at the Show of Hope:

showofhope.org