National Conference Planning Committee

Meet FIRST's dedicated group of volunteers that are working to ensure that this conference is a valuable, meaningful and uplifting experience for all who attend.



 

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 22 years.  We are privileged and delighted that Denise has continued with our 2020 national 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 2020 conference development process is invaluable to the entire community!
 

Sean and Jolie Cina

Sean and Jolie are the proud parents of adorable 11-year-old Portia and 8-year-old Myles, both of whom are affected with ichthyosis en confetti.  2019 officially marks the their 10th 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 2020 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 14-year-old Ema who is affected with ARCI-CIE.  Sarah has been a dedicated supporter of the FIRST mission for many years. Her her creative fundraising events for FIRST, like the 2013 Dance-a-Thon, 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 continuing to be a part of our 2020 conference planning committee.

Sarah and Jonathan Kimmelman

Sarah and Jon are a unique family of FIRST in many ways.  Sarah is affected with epidermolytic ichthyosis, and their son Alexander, is affected with ARCI-CIE ichthyosis.  But also, the Kimmelmans 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 2020 National Conference planning team.

 

Carrie Lynn McCullers

Carrie is the proud mother of 11-year-old Cailyn, affected with ARCI-lamellar ichthyosis. She's been very active with the PTA for both children, including helping with festivals and fundraising auctions. She also loves to bake and shoot archery and enjoys both fresh and saltwater fishing. Carrie attended the FIRST National Conference for the first time in 2018, when we were in Nashville. During the conference, she became so enthused to get involved with FIRST and is a natural addition to the planning committee for the 2020 National Conference in Providence.     

Terry Lee Smith

Terry, a long-time member of FIRST and a veteran conference attendee, has participated in research taking place at the National Institutes of Health.  He has been a research patient in many different studies since then. It was only after working with the doctors at Yale that he found out that he, his daughter Jordan, and now his grandson are affected with ichthyosis en confetti. When he's not involved in studies, Terry likes to make music, cook and take care of his Chia pets.  FIRST is very happy to have him join the conference planning committee for the Providence conference. 

 

 


Conference date & location:

Friday, June 26, 2020 7:00 am - Sunday, June 28, 2020 2:00 pm                                         #FIRSTNC20
Crowne Plaza Providence-Warwick Airport
801 Greenwich Drive
Warwick, RI 02886

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