$10 Donation at the Door

Performances by The Sonic Curators

$1 From Every Drink Sold will be Donated

Epic Moustache Shave by the Fire Association

Rebecca was born May 30th, 2019 and has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1 on November 19, 2019 at the age of 5 ½ months old. This is already a long time to have lived with the SMA disease without treatment. Awareness of this disease is lacking. SMA is not on the radar for most pediatricians. Rebecca has been misdiagnosed since birth. Rebecca is not able to sit on her own or keep herself supported. Her movement in her arms and legs is minimal. As time passes, she will continue to lose these functions.

With each day that passes without treatment for Rebecca, her motor neuron cells will continue to become weaker and weaker and eventually die. Once her cells stop working, they cannot be brought back. Zolgensma is designed to produce SMN protein in the motor neuron cells which preserves valuable muscular function needed for Rebecca to survive.

We are fundraising to get Zolgensma for Rebecca’s SMA Type 1. Zolgensma is currently not available in Canada but has been FDA approved and available in the USA, costing 2.125 million dollars USD. This treatment was labeled the most expensive treatment in the world. Zolgensma is a prescription gene therapy used to treat Spinal Muscular Atrophy (SMA) in children less than 2 years of age. Zolgensma is a single one time infusion therapy given intravenously which only takes about 60 minutes. It targets the genetic root cause of SMA by replacing the function of the missing or non-working survival motor neuron gene (SMN 1). The new gene tells motor neuron cells to produce more survival motor neuron (SMN) protein. Motor neuron cells need this SMN protein to survive and support muscle function.

Your donations and prayers for Rebecca are greatly needed and appreciated.