A Community Unites at Dane’s Friends for FIRST Concert, 2014

It was an evening of music and magic, wrapped in the bond of a community that cannot be broken. From the very first moment, it was clear that all of the attendees at the Dane’s Friends for FIRST concert at the Heritage Theater in Campbell, California, were not only abuzz about the incredible silent auction and upcoming performances, but each had been personally touched by the story of Dane Phelps. It was hard not to hear the sharing of special memories amongst the crowd, or notice the curiosity and hope that has captivated this community. They were eager to learn more about the rare condition that affected Dane, the mission of FIRST, and how they could best be of service to the cause of FIRST.

Dane's Friends for FIRST is a fundraising concert event that was inspired by the life and memory of Dane Christian Phelps.  Dane was affected with ichthyosis along with heart issues, tragically leading to unexpected heart failure in 2008, at the precious age of 3 ½ years old. For the past three years, the Phelps family has hosted a concert, near their community of San Jose, California, to honor Dane’s memory and to serve as a fundraiser for FIRST.

As in the past two years, the 2014 Dane’s Friends for FIRST Concert was as enchanting an evening as ever. The tone for the night was set with an inspiring video montage of the 2014 FIRST Family Conference, including member interviews and messages about FIRST’s mission, followed by an enticing orchestra performance. Soon after, a parade of dancers, including Chandler Phelps, and singers and musicians, including Cade Phelps, filled the stage for the rest of the evening. Performances began with the iconic songs of yesteryear like “Every Breath You Take,” by the Police and “Your Song,” by Elton John, ranging all the way to the hits of the 2000’s with songs like “Til Kingdom Come” by Coldplay, and like “I Will Wait” by Mumford & Sons. One by one, the musicians took the stage - a soulful saxophonist, rousing guitarists, an orchestra of harpists, and several pianists, amongst many other musicians, played exquisitely throughout the evening. The dancers performed truly “dreamlike” routines, sweeping the audience into a night they will not soon forget.

And in the midst of all the wonderful entertainment, the lovely Suzanne Phelps introduced a young woman named Grace Ryan, who had flown in from Hamilton, New Zealand. The Phelps family had met Grace at the 2012 FIRST family conference, where they first heard her sing, and where they decided, right then and there, that they would invite her to perform at their next event.

But unlike any of the other performers at this concert, or the two previous events, Grace is affected with epidermolytic ichthyosis (EI), which causes a new skin layer to be produced every 2-3 days instead of the normal 14 day cycle. Her hands and feet are her biggest challenge, and the blistering and arching feet restrict her mobility. Yet, when Grace took center stage, it was hard to notice anything but her angelic voice, as she sang the heartfelt song “Beautiful,” by Christina Aguilera.

Videos were shown throughout the evening highlighting the FIRST-funded doctors who have dedicated their careers to ichthyosis research, and special broadcast interviews of our members. The overall presentation offered a true picture of the kind of support and advocacy provided by FIRST to the ichthyosis community.  The evening ended with an extremely moving performance of “Bridge Over Troubled Water,” by singer Joyce Randolf.

We’d like to thank all of the performers and the caring community of Campbell, California, and to offer our deepest gratitude to the Phelps family, for all their hard work and passion, and for their unwavering commitment to the mission of FIRST. Together, we will make a difference. Find out more about the Dane’s Friends for FIRST Concert and Underwriting Campaign.

Performances and concert participants included:

Mentors/Teachers/Choreographers: Valley Christian Strings Ensemble; Valley Christian Jazz Ensemble; Angelic Harp Academy; Capitol Dance Company Choreographers and the Capitol Dance Company Dancers

Musicians: James and Katie Nobriga with Cade Phelps; Ryan Sims, Ethan Newman, and Andy Varner; Howi Dietz; Four Guys and a Girl; Eden in Exile; Mario Minardi; Mary Flinsbaugh; Joyce Randolph; Grace Ryan



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