Release the Butterfly Kicks off the Tour in Mechanicsburg, Pennsylvania

 

On Saturday, May 30, our incredibly talented FIRST families performed the Release the Butterfly Benefit Concert and it proved to be an evening of pure enchantment.

The concert was took place at the Capital Area Christian Church in Mechanicsburg, Pennsylvania, where families from the FIRST community including the Pretaks, Saylors, Steinitz, Evans, and Murphys, along with numerous friends and participants, presented a spectacular, multi-purpose event. It included over 20 inspirational performances by vocalists, instrumentalists, and dancers from Harrisburg, Pittsburgh, Philadelphia, Lancaster, northwestern Pennsylvania and Maryland. Along with a mesmerizing violin performance by Mikela Murphy, a special highlight of the show, for the second year in a row, was the “Behind the Butterflies” talk-show style Q&A segment, focusing on questions regarding ichthyosis and FIRST. Participants in the talk show included four extraordinary young women - Bailey Pretak, Abby Evans, Hunter Steinitz, and talk show host and FIRST friend, Natalie Hann.

Brand new to the concert this year was the location (a.k.a the first stop of the tour)! Tracie Pretak, mother of Bailey Pretak affected with autosomal recessive congenital ichthyosis – lamellar type ichthyosis (ARCI-LI), said, “We have been performing the concert in Johnsonburg and surrounding communities for over 15 years. As our audience has grown to include more and more affected families, it made sense to take it on the road and share it with their communities.” And take it on the road they did.

With the help of FIRST members Mark and Nicole Saylor of New Cumberland, Pennsylvania, whose family also performed in the concert, and who have adopted baby Daniel, affected with harlequin ichthyosis (HI), the first stop of the Release the Butterfly Tour, performed to an audience of nearly 80 people. Amongst other remarkable moments, a particularly emotional highlight of the show was when the Saylor’s three daughters sang “It’s You I Like” by Fred Rogers, in honor of their new brother Daniel.

Tracie also notes, “It is the first of hopefully many concert stops for the Release the Butterfly tour. We are already discussing a "tour stop" in Lancaster!   The tentative date (pending an open venue) is Saturday, September 19th. We believe we can make a difference with our message of hope and courage.  We already have.  And if we can keep connecting with more ichthyosis families and meeting others in the audience, it is so worth our time, money and effort.”

The 2015 Release the Butterfly benefit concert raised $1,800 for FIRST!  The commitment and enthusiasm of the FIRST community never ceases to amaze! FIRST is deeply grateful to all who attended and participated. Stay tuned for upcoming dates and information regarding the next stops on this incredible journey.

 

Performers and Participants (in alphabetical order)

Amanda Bertsch
Ross Bish
Sophie Duffield
Abby Evans
El Elmet Dancers of Reverence Studios (Alysha Argot, Sophie Gray, Callie McCaffrey, Leah Noss, Hannah Spangler, Emily Uber, Kayla Warren)
Sami Ferragine
Haley Freeburg
Natalie Hann
Mikela Murphy
Oakwood Baptist Praise Band (Dominique Benninger, Geren Fisher, Mark Saylor, Nicole Saylor)
Tracie Pretak
Bailey Pretak
Brandon Rexrode
Julian Saylor
Melody Saylor
Nicole Saylor
Savannah Saylor
Hunter Steinitz

 

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