Jolie Cina

“I first became involved with F.I.R.S.T. when my daughter, Portia, was born. We were sent to several different dermatologists trying to determine what kind of condition she had. When we learned she had ichthyosis, specifically ichthyosis en confetti, we researched the condition, which is how we discovered F.I.R.S.T.. We attended our first F.I.R.S.T. conference when Portia was just 10 months old and have been involved with the organization ever since. F.I.R.S.T. is an incredible resource for families dealing with ichthyosis because it’s such a rare condition and being able to connect with people who understand what it’s like is extremely valuable. Meeting other families who are walking in our shoes has been very meaningful and supportive to us. It has been wonderful for my children to meet other kids with ichthyosis, and the bi-annual family conferences are like a family reunion for us. I’m proud to serve on the board of FIRST for seven years now. I enjoy utilizing my marketing skills and expertise to raise awareness for ichthyosis and to help further the goals of the organization. Over the years my family and I have been involved in a lot of fundraising activities, PR and personal advocacy. It has been a very rewarding experience, and I am grateful for the opportunity to give back to an organization that has given so much to us and other families. As a full-circle moment, Portia will be delivering the keynote address at this year’s family conference in Minneapolis and we are extraordinarily proud of her “