NYC Marathon for FIRST            

Long time FIRST member Sean Cina ran the New York City Marathon and made it a fundraiser for FIRST!

As a veteran of FIRST grassroots fundraising, Sean was excited to try a new direction from his family’s usual wine tasting. The Cina family includes Sean’s wife, board member Jolie Cina, and their children Portia and Myles--both affected with ichthyosis with confetti. They were all in attendance for the marathon, cheering Sean on.

Not only did he finish the marathon on an unseasonably warm day, he also raised $6,800 for FIRST!

Big thanks to the Cina family for their ongoing support of FIRST!


             A 15 Year Tradition            

The Iott family has continued their tradition of hosting grassroots events for FIRST, hosting their 15th annual Pumpkin Paint in October. Pumpkins were donated by Iotts Greenhouse, whose owners are the grandparents of Rylee, affected with ARCI-CIE. Participants painted pumpkins and enjoyed sweet goods. Friends and family members donated the baked goods for sale. The event raised more than $3,000 for FIRST and much fun was had by all.

FIRST is so appreciative of the Iott family for their continued support of FIRST's mission!



              FIRST Night Out the Dodgers Game            

The Coates family once again hosted their LA Dodgers game for FIRST. There were 100 people in attendance on a beautiful night in July.  Ticket sale profits and additional donations added up to more than $1,700 to help advance FIRST's mission.  Thank you Coates family and supporters!


                           Putting on a Show for FIRST                         

Bailey Pretak has a passion for everything Broadway. Fro the second year in a row, she celebrated her birthday with a Broadway-themed event to benefit FIRST! She gathered some of her closest theater friends, as well as some of her mother's music students, and together they performed their favorite songs from Broadway shows.

Tables were decorated with taxis, NYC street names, and Playbills, and a beautiful backdrop of the NYC skyline decorated the stage. Attendees could order food from the venue and bid on several different auction baskets like Girls' Night Out, Kids' Summer Fun, Movie Night, and an NYC Theme. The event raised over $2,100!

Let's give a standing ovation to Bailey for using something she's passionate about to create a great fundraiser.  We can't wait to hear how your birthday bash goes next year!


             Raising Awareness Across the Community            

The Steinbrunner family of Harrisburg, PA hosted two events this year, where their family and friends came out to support Wendy's daughter, Harley.

On Rare Disease Day, Hershey Medical Center put the spotlights on and "Lit Up for Rare."

During Ichthyosis Awareness Month, they hosted a fundraiser at Hoss' Steak & Sea House where a portion of the proceeds were donated back to FIRST.  They raised over $200!





THANK YOU to all our grassroots fundraisers!

Tips for Creative Fundraising:

  • Remember people are eager to connect
  • Everyone has different boundaries – allow for many choices in participation
  • Food, entertainment, and information are universal draws
  • Use technology to get the word out and tell your story
  • Contact FIRST to build a fundraising page

To learn more about hosting a fundraiser Contact Denise Gass at FIRST


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