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FARAFARA Cure FA

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. 

 

I was delighted to find familiar faces, and to meet a few new ones: the college student and aspiring scientist, the crafter of beaded bracelets and keychains that read “cure FA,” the mother with her curious, adorable infant. As those with FA gathered for a group photograph, one of those new faces— a parent—insisted that I be in the picture, too. I realized later that she may have mistaken my limp for a sign of FA. Gavin wondered about it, too. He asked me a question that others had asked before him over the years at fundraisers and at the Children’s Hospital of Philadelphia: FArm18 2

“Do you have FA?”

“No, I have something different,” I told him. “I have CP.”

I explained what cerebral palsy is, how it affects my mobility too as FA affects his, but that it is a very different disorder.

“I hope they find a cure for CP,” he said.

“Thank you, Gavin,” I said, “but I’d rather focus on finding a cure for FA. Don’t worry about CP— I have CP, and I’m okay!”

Gavin smiled and said: “I still hope they find a cure for CP— I have FA, and I’m okay!”

Difficult though FA may be, it is no match for Gavin’s generous nature. It is no match for the hopefulness of childhood, for the dedication of our scientists and advocates, or for the momentum that holds this community. FArm to Table was a great testament to that power. Together we will cure FA— in that I have every confidence, and I am very lucky to be with you as an ally along the way.

Community Contrib SarahGelb

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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