Denise Benedetto

A teacher and a mom to Marc Benedetto, affected with ARCI-lamellar ichthyosis, Denise has been a dedicated and passionate advocate for FIRST for the past 20 years.  We are privelaged and delighted that Denise has joined our 2018 conference planning team! Denise's positive energy, friendly nature, and sheer grit for "getting things done" has made her an unstoppable force for advocating for FIRST and the entire ichthyosis community. The Benedettos were honored as the 2016 recipients of the FIRST Champions Award and they have held more than a dozen fundraisers to support the mission of FIRST.  Additionally, Denise has frequently contributed to FIRST's library of resources and she is a committed member of our regional support network. Denise is currently serving as the Secretary on the FIRST Board of Directors. Her guidance and input into the 2018 conference development process is invaluable to the entire community!

Sean and Jolie Cina

Sean and Jolie are the proud parents of adorable 8-year-old Portia and 5-year-old Myles, both of whom are affected with ichthyosis en confetti.  2017 officially marked the their 8th annual Wine Tasting fundraising event for FIRST at their home in New Jersey. The Cina family have been strong advocates for FIRST and ichthyosis awareness over the years, and are also familiar faces at the FIRST National Conferences. In 2014, Sean and Jolie lead a skincare tips workshop at the National Conference in Indianapolis. Additionally they have been featured in FIRST's educational videos, including the FRAME video produced in collaboration with the Positive Exposure Foundation, and a number of online resources and communications. With the insight and dedication of members like the Cinas, the 2018 National Conference is sure to be an amazing experience for the entire family!

Abby Evans

FIRST has had the privilege of watching Abby Evans, affected with ARCI-lamellar ichthyosis,  grow and blossom into the confident, intelligent self-advocate she is today. Abby is well-known for her bubbly personality and friendly, welcoming presence at FIRST events. She was featured in the FIRST FRAME video produced by FIRST and the Positive Exposure Foundation, and she is a frequent participant in FIRST teen panel discussions. Additionally, in recent years, she has participated in the amazing Release the Butterfly Benefit Concert. We are thrilled to have Abby on our committee and privileged to have witnessed the journey of this remarkable young advocate. Her parents Mark and Rhayne have been involved with the organization since Abby was first diagnosed. Currently Mark serves on the FIRST Board of Directors.

Sarah Hodgkinson

Sarah is the mother of 13-year-old Ema who is affected with ARCI-CIE.  Sara has been a dedicated supporter of the FIRST mission for many years. Her her creative fundraising events for FIRST, like the 2013 Dance-athon, along with her public relations savvy, bring a remarkable amount of awareness and support to the ichthyosis community. Additionally, her willingness to support and connect with other mothers has made a positive impact on families for generations to come. We are delighted that she is part of our 2018 conference planning committee.


Diana and James Gilbert

Diana and James Gilbert, have been impactful volunteers for the FIRST community for many years.  Diana, affected with Netherton syndrome, has leant her creativity and energy to many FIRST initiatives including both the IAM and RAISE fundraisers, FIRST to Know conference calls and FIRST patient support events.  Their engaging and lively personalities bring a special warmth and excitement to FIRST events and they are very encouraging to the entire community. We are very appreciative of their dedication to conference committee and the success of the 2018 National Conference.


Sarah and Jonathan Kimmelman

Sarah and Jon are a unique family of FIRST in many ways.  Sarah is affected with epidermolytic ichthyosis, and her son Alexander, is affected with ARCI-CIE ichthyosis.  But also, the Kimmelman's have a contagious enthusiasm for bringing community together. Their involvement in FIRST events and the regional support network has been inspiring and transformational for the whole community.  They have not only participated in online FIRST fundraisers like RAISE and IAM, but also enthusiastically coordinated a FIRST Night Out for baseball fans and FIRST supporters. We are delighted that they are both a part of 2018 National Conference planning team.

Conference date & location:

Friday, June 29, 2018 7:00 am - Sunday, July 1, 2018 2:00 pm
Nashville Airport Marriott
600 Marriott Drive
Nashville, TN 37214

Register for conference

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