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More Than Pizza

2018FlatbreadI feel each day we hear of yet another breakthrough. We are coming closer and closer to the cure. Although I am not eligible for many “active drug” trials, I still want to contribute. As I wait, I do all I can to help FARA keep going by fundraising and raising awareness.

Everyone needs to eat dinner so why not have pizza and beer, while listening to live music and supporting a good cause on a random Tuesday night. For the past six years, that’s what I do.

On Tuesday night, April 24, 2018, I had a "Flatbread fundraiser for FARA". Flatbread restaurant, which serves organic brickoven pizza, has a weekly charity night. A portion from the sale of pizza goes to FARA. A keg of beer was donated by a friend and the entire sale also goes to FARA. Joe Parrillo started off the night with some acoustics. My uncle Neil Porter and his band, Grand Theft Audio, closed the night playing some great tunes and my aunt belted out a few songs. I was rolling around from table to table checking out everyone’s pizza! 

Cure FA Soirée: React with Music

CureFA Soiree 1The super amazing and fun ‘Cure FA Soirée: React with Music’ was a benefit for FARA featuring musical performances of friends & local talents Renee Anderson, Whiskey and Pie, and Jamie Bramble; plus updates from Michael Gehr, Kyle Bryant, Dr. Angel Martin & Dr. Sanjay Bidichandani (who was part of the team that discovered the FA gene in ‘96).  It was held on April 14th, 2018 in Edmond, Oklahoma, and it was put together by Michael Gehr and his parents: Eric & Liz. I had the pleasure of being a part of this event with the special invite from the Gehr family. I drove over to Edmond from St. Louis with relatives of the Gehr’s. We arrived Friday the 13th, and had non- stop fun until we left Sunday the 15th. I enjoyed dinner and a downtown exploration with the Gehr’s Friday, met new faces before and during the event on Saturday and concluded with an intimate brunch with some participants of the Soirée on Sunday.

The theme of the Soirée was ‘React with Music’, which comes from the tagline of The Ataxian documentary, “Life is About how We React.”  Michael and his family are all singers, and all have a great love of music. In school, Michael has always enjoyed singing, and he has participated in choir, musicals & talent shows since 3rd grade. Many of his closest friends are involved in Heritage Hall Performing Arts. (Heritage Hall is a college prep school Michael has attended since preschool.) “It was wonderful to hear performances of many of Michael’s friends from school, and a high point of the evening was Michael’s mostly solo performance of the song ‘Creep’, with backup from the school choir.” - Liz Gehr 

2018 FArm to Table

FArm18 1Gavin Lambert is twelve years old. He tells me that he wants to be an actor and a basketball player when he grows up. On March 3rd in Plant City, Florida, the community raised $45,000 in his honor. A farm was transformed into an elegant dining hall. Uniformed friends served a professionally prepared meal with farm-grown ingredients, and a choir performed musical favorites for guests, with Gavin seated behind them on the grass, singing along. His brother Evan sold a folder full of drawings for $500 to a generous donor.

I came as a stowaway with FARA Ambassador Lealan and her husband Daniel. Lealan had designed beautiful FArm to Table logos and programs. I took a few photographs, plated salads with an assembly line of volunteers, and auctioned off my late grandmother’s heart-shaped cream cheese cookies alongside bracelets, paintings, furniture, and an impressive array of donated items before slipping into an empty seat beside FARA’s own Felicia DeRosa. 

8th Annual Pull for a Cure

8ann Pull4aCure"The 8th Annual Pull for a Cure was held on Saturday, February 10th. If you’ve never been or heard of this event, it is one you don’t want to miss! Held at Tampa Bay Sporting Clays, the day started with clay shooting on an 8 station shooting course and ended with a tasty meal catered by World of Beer. The event also featured massages, raffles, live entertainment and a craft beer & food pairing class for non-shooters!

This year there was a cowboy theme! One of our newest donation raisers this year was the ‘Paul Avery Roping Competition.’ After the raffle winners were announced, they asked who wanted to donate money and see a real cowboy, Ben Barthle, rope my dad. Of course, everyone jumped up to donate and then the roping commenced. This definitely brought a lot of laughs and a lot of funds for FARA. 

UCLA/FARA Friedreich's Ataxia Patient Symposium

On February 23, 2018, I attended the UCLA symposium on Friedreich's Ataxia put on by FARA in Torrance, California. I decided to attend this event because it was only about 230 miles from my home. Since my diagnosis in 2002, I had never actually personally met another person with FA. Needless to say, I was very excited to attend the event.

I was not disappointed. After meeting several fellow FAers, they were extremely friendly and immediately made me feel like part of the FAmily. For many years I have been wearing a mask of sorts as a coping mechanism. Putting up this front has been completely exhausting. It was a wonderful feeling to drop the mask and be completely open and honest with other FAers. It was great to discover that myself and a fellow FAer had both fallen and broken off our front teeth. We were both laughing while we were telling the story of this similar experience. Whenever I have told this story to someone without FA, they don’t quite know how to react and it becomes somewhat awkward. My tooth has been completely replaced so I think it’s a funny story. Words really can’t explain the feeling of removing the mask, even if only for one day. 



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