Dominique Romer Runs        SoNo Half Marathon       

On October 1st in Norwalk, CT, FIRST Member Dominique Romer ran the SoNo half-marathon. She raised over $13,000 in support of FIRST and to celebrate her three year old son James, who is affected with EI!

FIRST CEO Christopher Boynton was there to cheer her on, as the race just happened to go past his house!

Thank you Dominique, and congratulations on a successful first fundraiser!

                  Cornhole Tournament for FIRST                 

A day I don’t think we will ever forget.

Our son Logan was born with ichthyosis just under 3 years ago. It is a skin condition with varying degrees of severity (Logan has ARCI-lamellar ichthyosis or ARCI-LI).

The @foundationforichthyosis was mentioned to us a few hours after he was born and we shook it off. What could a foundation do for us? We will handle this on our own. We could not have been more wrong. Our family attended our first FIRST conference in Providence last year and right then and there we knew we needed to do something to help support them.

On September 9th, we held a cornhole tournament fundraiser to support FIRST. We were anxious, overwhelmed, unsure if we knew what we were getting into as more and more people showed interest. All of that melted away when the day came. We couldn’t even begin to thank every person who had a hand in helping us and taking a little off our plate, the list is endless.

This picture is the reason we held the fundraiser and why FIRST is so important to us. Five individuals with ichthyosis met together to share a common goal, raise awareness for their skin condition. Along with those five were 95 other individuals there to support, love, and have a great time together.

We raised close to $14,000 for this fundraiser. We can’t look at that number and not tear up. We are the luckiest people on earth to have such incredible individuals supporting us and this foundation!

Thank you all!!! We love you!

                           FIRST Night at the LA Dodgers                         

The Coates family hosted their FIRST Night at the LA Dodgers for the sixth year.  100 of their family, friends and supporters, joined the festivities at the LA Dodgers game on September 1st for a FIRST fundraiser.

These types of grassroots events not only raise money ($1,800 this year) for FIRST but they also create awareness and allow many to gather and support a great cause.


                      FIRST Night at the New York Mets                    

Over 300 friends and family of Marc Benedetto and Kylie Saccente gathered on June 2nd to support and raise awareness for ichthyosis at a Met's game. Over the years, FIRST Night Out at the Ballpark events have taken place across the United States and continue to be a way for friends, families, and FIRST members to connect. FIRST members, along with family and friends, have been gathering at Citi Field, the Met's Stadium, each year for many years.

On this particular night, the Met's may have lost, but the ichthyosis community celebrated many wins, as affected members raised awareness. The Benedetto and Saccente families were honored via a special ceremony on the field prior to the start of the game. Additionally, the section where everyone was seated together received some extra special attention throughout the game.

FIRST thanks the Benedetto and Saccente families – and all the families who have supported FIRST through Night Out at the Ballpark events – for raising awareness and funds through these fun celebrations!


                                Putting on a Show for FIRST                              

Bailey Pretak held her annual birthday fundraiser “Bailey’s Broadway Birthday Bash” on Saturday, June 17, at The Royal in Ridgway, PA.


Pretak came up with the idea during the 2020 pandemic. Gatherings were limited when her birthday rolled around, so she asked several of her talented, musical theater-loving friends to record themselves singing their favorite Broadway tune. They submitted the videos and, on her birthday, everyone gathered virtually to watch the performances. The following year an in-person concert was held, and it has become an annual tradition since.


This year’s show featured over 20 performers that were a mix of professional musicians, college students studying musical theatre, and some of Tracie Pretak’s (Bailey’s mom) voice students.  They presented songs from musicals such as Six, The Phantom of the Opera, The Sound of Music, Wicked and many more.  Guests paid for a ticket to the show and had the opportunity to bid on themed auction baskets.  It was a great evening and Pretak was able to raise over $3,000 for FIRST!

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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