Become a FIRST Volunteer – Join Today!

As a FIRST volunteer, you can connect with others in our community in a way that helps you and the community.  You can also honor a friend or loved one living with ichthyosis with your service. You can help improve the quality of life of other affected individuals in your area and around the world.  It only takes a little time to make a big difference.

Join FIRST CEO Christopher Boynton for a new member orientation session.  Sessions for 2023 are scheduled. Follow this link to register.

We are looking for help in several areas including program development and execution, fundraising and meeting planning.

FIRST Meet-Up Team

FIRST is developing a series of meet-ups, virtual at first, that will provide more informal opportunities for people to ask questions, share experiences and connect with others on a similar journey.  Groups for new moms, young professionals, adults and others will be created as needs arise.  We need help with the following:

Meet-Up Design – help create the loose agenda, starter topics, frequency and promotion plan

2 month project, approximately 3 meetings.  If interested reach out to Christine at 

Facilitator Training - help create the facilitator guide and training session.  The meet-ups will be run by a facilitator that will ensure the conversation is productive, participatory and meeting the needs of those in attendance.

-- 2 month project, approximately 3 meetings.  If interested reach out to Christine at

Meet-Up Facilitator – the conversation starter,  moderator and closer.  You will also be asked to track participation and report out numbers and results from each meeting.

Ongoing project, approximate time commitment of 2-3 hours per month.  If interested reach out to Christine at


FIRST will continue to provide virtual educational sessions monthly on timely topics with expert speakers.

FIRST to Know Producer - create topics, recruit speakers and schedule FIRST's virtual educational sessions.

-- Ongoing project, 2-3 hours per month. If interested reach out to Christine at

FIRST to Know Host - open the session, moderate the conversation and wrap up the session.

-- Ongoing project, 2 hours per month.  If interested reach out to Christine at

Patient Support Forum Planning -- We are very optimistic that we will be able to host 3 to 4 in-person, regional events next fall.  This group will work to create the agenda, recruit speakers, create the promotion plan, develop any collateral to be distributed at the meetings and conduct evaluation post-event.

Multi-lingual individuals

FIRST provides information to affected individuals around the world.  If you are multi-lingual and would like to assist the staff with translation, primarily Spanish, when communicating with individuals, please reach out via email.

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