Foundation for Ichthyosis and Related Skin Types (FIRST)

Pick a point in your life and write about your challenges or successes. Theatre and acting have always been a very important part of my life. I've been acting since the 4th grade and it continues to bring me joy. However, growing up with ARCI-lamellar ichthyosis has presented challenges. The stares and inappropriate questions from castmates caused my confidence to drop severely. I felt like an outsider. I was even told at one point by a casting agent that I'd never book a role because of my skin. Despite those deterrents I continued to do what I love. I kept acting, booking roles, and even getting scholarships for my acting ability. I'm very glad I never let other people's negativity, or my own, stop me from doing what makes me happy. How has FIRST impacted your life? FIRST has a very special place in my heart. This organization has created a community of people that understand what I have been through, and continue to go through on a daily basis. It's so amazing to be around people who truly get what living with a genetic skin disorder means.

Why do I support FIRST? I will tell you why. Twenty-one years ago, I gave birth to my first child. It was an uneventful pregnancy until my son was born. He was covered in what looked like plastic wrap. His eyes were wide open and his ears looked like they were in a cocoon. My doctors were clueless and I waited 8 hours for a dermatologist to tell me what was going on. Finally I was told that my son had lamellar ichthyosis. I had never heard the word before and I couldn’t even pronounce it. My friend, who just happened to be an OB/GYN, did some research on ichthyosis and found the Foundation for Ichthyosis and Related Skin Types. I connected with the organization and the rest is history… During those early days, weeks and months, FIRST was there for me. They connected me with other moms who knew what I was going through. They answered my questions and concerns. I now had a support network, and I know that I could not have survived without them. I was able to attend the FIRST National Conference when Marc was just a toddler. I remember crying the entire weekend! I realized I wasn’t alone. The conference educated me and I learned new things to help Marc. I was able to meet those moms who had been so helpful on the phone. I was able to see other children and adults who were living “normal” lives despite having ichthyosis. It was then that I realized Marc was going to be fine. FIRST has been a HUGE part of my life for the past 21 years. I have been impressed by the efforts of the foundation to connect, educate and inspire its members. FIRST works tirelessly to support those living with ichthyosis every day. They continue to fund research projects, organize biennial national conferences and regional conferences, conduct FIRST to know calls, sponsor the Ichthyosis Registry at Yale, recruit members for clinical trials and utilize the support network to connect new parents & members. That is why I support FIRST. Although Marc is now an adult, I still support FIRST because I am so grateful for their help when he was born. I believe in paying it forward. FIRST helped me, and I know my donation will help others. I hope you will continue to support FIRST. Think about all the things FIRST has provided for you…and where would you be without them…I don’t even want to think about it. Sincerely, Denise Benedetto As a parent of a child affected with ichthyosis, Denise’s story might be similar to yours. Your financial support will allow FIRST to continue to help other parents when they need it the most with programs such as the new Pen Pal program, UFIRST Scholars program - created to help with the financial obligation of college - and the connections your family can make at the National Conference, Patient Support Meetings, and through FIRST’s social media channels. Please join Denise and support FIRST.