Member Story - Angie Foy, Washington State

Finding Her Voice, Creating Hope

For years, Angie has shared her daughter’s story to help others feel less alone. But along the way, something unexpected happened: Harper found her own voice, too.

Determined to help Harper grow up knowing she belongs everywhere she wants to be, she began speaking up, advocating, giving interviews, appearing on television and documentaries, and sharing their journey publicly. These are the things she never imagined herself doing. Read more here.

New Program Opportunities

Major Research Milestone for Ichthyosis and

Related Skin Disorders

Northwestern University and Yale University will lead a new NIH-funded, $5 million national research consortium dedicated to rare inherited skin disorders. The Consortium for Hereditary Epidermal Differentiation Disorders (CHEDD) will bring together researchers, clinicians, and patient advocates to better understand these conditions, track how they progress, and advance potential treatments.

FIRST is proud to contribute to this important effort, helping ensure that the voices and needs of individuals and families affected by ichthyosis are central to the research.

Read the full announcement here.

FIRST Physician Research Fellowship

FIRST is proud to introduce the FIRST Physician Research Fellowship, a new program designed to identify and train the next generation of clinicians who will care for people with ichthyosis and related skin disorders and advance research toward better treatments and, ultimately, cures.

The fellowship supports a Board-certified or Board-eligible dermatologist at a tertiary-care academic institution who has a demonstrated commitment to ichthyosis and is nominated by their institution and mentor.

More UFIRST Scholarships

🎓 NEW OPPORTUNITY

Now Accepting Applications

The UFIRST Scholarship Program is opening a second application cycle for 2026! Thanks to the generous support of Beiersdorf, makers of Eucerin and Aquaphor, five $5,000 scholarships will be awarded to help cover tuition and/or fees for the Winter/Spring 2027 school year.

The opportunity is open to individuals affected by ichthyosis or a related skin type who are pursuing post-secondary or graduate education at an accredited college, university, junior college, or trade school. Previous UFIRST recipients are eligible to apply again.

Applications are being accepted now, with scholarship recipients notified by the end of November. More info here.

New Program Emerging Leaders

🌟 Calling the Next Generation of FIRST Leaders!

Are you 16–25 years old and ready to make a difference in the ichthyosis community? The FIRST Emerging Leaders program gives young people the opportunity to build leadership skills, connect with peers, participate in advocacy, and help shape the future of FIRST.

No previous leadership or board experience is required, just your passion, ideas, and willingness to get involved!

Learn more about the FIRST Emerging Leaders program and how to apply.

Research

Help Advance Research in Women's Sexual Health

Researchers at Mayo Clinic are conducting an anonymous survey to better understand sexual health, sexual function, and quality of life among women with different types of ichthyosis or epidermal differentiation disorders.

🔗 Survey Link

Questions? Contact: Sanchez.mariajuliana@mayo.edu

FIRST Part-Time Admin Assistant (Remote)

FIRST is seeking a detail-oriented, compassionate and self-motivated Part-Time Administrative Assistant to support our mission of improving the lives of individuals and families affected by ichthyosis. This remote position offers 10–15 hours per week and includes administrative support, donor and database management, scheduling, communications and meeting coordination.

The ideal candidate has 1–2 years of administrative experience, proficiency in Microsoft 365, and hands-on experience with DonorPerfect or a similar nonprofit CRM. If you’re organized, a strong communicator, and passionate about making a difference in the rare disease community, we’d love to hear from you!

Interested? Learn more and apply to Chris Boynton.

Jeff Civillico - Being an Everyday Influencer

Jeff’s humor, warmth, and engaging personality kept the conference energized from beginning to end. His ability to bring people together through laughter created countless memorable moments and perfectly captured the welcoming spirit of the FIRST community. Watch it here.

Upcoming Events

New Member Orientation

January 5, 2027 @ 5:00 pm

Please join FIRST CEO, Christopher Boynton for a live Zoom to learn more about the programs and services that FIRST has to offer. Register here.

Northwestern Warm Up February 27, 2027

Chicago Area Members

Ichthyosis Winter Warm-Up at Northwestern

Families, friends, and individuals living with ichthyosis are invited to gather for an afternoon of connection, learning, and support at the Ichthyosis Winter Warm-Up at Northwestern on February 27, 2027, hosted by Dr. Amy Paller and the Northwestern/Lurie Children’s team.

The event will feature networking, lunch, research and treatment updates, entertainment, discussion groups, and plenty of opportunities to connect with others in the ichthyosis community. Discounted parking will be covered, and attendees will have the chance to explore products, discover new treatment ideas, and share experiences with fellow families.

Date: February 27, 2027

Time: 12:15 PM to 4:30 PM

Location: Lurie Children’s, Chicago, IL

RSVP: Contact Giuliana Wells at giuliana.wells@nm.org to reserve your spot.