Volunteerism & Grassroots Fundraising efforts truly blossomed with the arrival of Ichthyosis Awareness month.  At home, online…and everywhere in between – members were more enthusiastic than ever about getting involved!  Kudos to all who rolled up their sleeves, got creative, and tackled the task of spreading the word and local fundraising….

Bake Sale
FIRST member Mannessa Elliott is the mother of adorable Amantae who is affected with x-linked ichthyosis.  Mannessa held a scrumptious bake sale and silent auction event at the Pub on the Cedar Restaurant in Charles City, Iowa.  Her fabulous baked goods were the talk of the tavern and raised a whopping $1,053!   In addition, Manessa was interviewed on local television station 3KIMT.  She talked about her fundraiser and created awareness about ichthyosis.  Thanks Manessa!

E-bay Vacuum Auction!
Going once…going twice…sold!  A unique fundraising tactic, FIRST member Susan Schumacher auctioned a high-end vacuum cleaner off on Ebay. And although her original goal was raise $650, she actually exceeded it, raising a total of $750! Great idea Susan!

Indoor Garage Sale
Needless to say, there were plenty of hidden treasures at FIRST member Allison Lyons' garage sale, as funds raised for the day were over $6,000!  “It feels great to increase awareness as well as help with fundraising,” said Allison with regard to her success. Her daughter, Peyton, wanted to do something to help younger sister Madelyn, who is affected with epidermolytic ichthyosis, so she and her friends held their own fundraiser that day.  They made duct tape items and sold them, raising $76!  We’re grateful for all of their hard work.

Evan’s FIRST T-Shirt Sale
FIRST member DeDe Fasciano and her son Evan, who is affected with Harlequin ichthyosis,  held a T-shirt sale!   The t-shirts featured a singular, heartfelt phrase to live by: “Sometimes We Live No Particular Way, But Our Own.”  Donations totaled over $1,000.00!
FIRST Family Dance-a-Thon
The Hodgkinson Family held a FIRST Family Dance-a-thon, preceded with wide-spread local press, including television, radio and newspaper. In the end, they raised over $5,000!  “The attendees had a blast!  One boy even asked his dad to check the newspaper for other Dance-a-thons they could go to the next weekend,” said Sarah Hodgkinson with regard to the event’s success.  Sarah is the mother of 8-year-old Ema who is affected with CIE.  In addition to this fantastic event, Sarah also created awareness on the blo Tosaa Reno, talking about clean eating and ichthyosis.  Way to go Sarah!

4th Annual Wine Tasting event
The Cina family, who have both of their children Portia and Myles affected with ichthyosis en confetti, a spectacular Wine Tasting Event, right in their own home. Friends and family enjoyed sipping wine, learning about it’s about taste and texture, and, most of all, making a difference. Donations for the evening totaled more than $2,500.


Running for Research
FIRST member Jessica Barney, whose son Wyatt is affected with epidermolytic ichthyosis,  participated in the Orange County ½ Marathon fundraiser with the first mile of marathon taking runners along the beautiful Pacific Ocean, winding through the seaside village of Corona del Mar and eventually greeting the finish line at the bluffs that overlook the Upper Newport Bay Estuary Reserve. Runners were not only accompanied by the breathtaking terrain, but were also greeted by cheers of neighborhood residents. Donations totaled nearly $1,500.00! Congratulations Jessica!

FIRST Collection Jars & Community Outreach
A tremendous thanks to FIRST members Nancy Osentoski, Curtis Tober and Alicia Morales who spread the word door-to-door by placing collection jars throughout their community.  Collectively, they raised over $2,500 during May!  And a special thanks to Dianna Gilbert, who spread awareness by handing out FIRST brochures throughout her entire community.



Kitty Morris Wall  took a unique approach to IAM by posting daily “day in the life” posts on her Facebook  page about her adorable ichthyosis princesses, her granddaughters.  Here’s one of our favorite posts…

May is Ichthyosis Awareness Month!

Were you aware that little princesses with ichthyosis love to play in the hay.

It's true!

Just her kind of normal.



The Blogosphere was on fire all month long!  The already popular blogs from members Dede Fasciano, Courtney Westlake, Carly Findlay, Rachel and Jennifer See, and Cora Cossel were all the rage!  From informative and enlightening to provocative and heartwarming, their posts, photos and videos, raised awareness, funds, and inspired new connections all over the world.  Great job bloggers!

Member Patty Sundik created a special editorial style Pinterest page which featured posts of all the special member stories shared by FIRST throughout the month.  Plus, Patty sells posters of her grandson’s drawing (SMILE) on her online Etsy shop to help raise funds for EI research.  100% of the sales from the posters go to FIRST and 10% of her total sales go to FIRST every year. We thank you for your creative, and generous, spirit Patty!

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