eNews

Member Update - Catherine

July 2, 2020 was simultaneously one of the best days and worst days of my life. After a day of labor, my second child, a beautiful little girl named Amelia Skye was born. As quickly as the nurse placed her on my chest she whisked Amelia away. Read more here.

Share Your Story

Every one of our member updates is the most read section of the eNews. Do you know that your story can help others in our ichthyosis community? Share your story by sending it, along with a picture, to Christine so that we may include it in a future edition of this newsletter. Thank you!

Austin One-Day Meet Up

Don't miss out on this one-day meeting in Austin, TX with Dr. Moise Levy. It's a great way to join others with ichthyosis, gain valuable medical and research information and make wonderful connections.

Don't delay, register by May 1st!

News and Research

Participate in a Quick Survey

Calling all individuals with ichthyosis living in Canada or the United States!

Researchers from the HEaT Lab at Brock University are conducting a new study focused on physical activity, heat illness symptoms, and ichthyosis. We are looking for individuals affected by ichthyosis living in the United States or Canada to participate in this research by completing a short survey (~10-15 mins). Those who are interested may enter a draw to win a gift card!

Want to participate? If you are 18+ and affected by ichthyosis, click the link below to learn more about the study:

Take the Quick Survey Here

Choosing to interact with this posting in any way (e.g., “liking”, “sharing”, etc.) may impact your anonymity with regards to the study.

The study has been reviewed and cleared for recruitment by the Health Science Research Ethics Board at Brock University (REB File No. 24-141)

Biologics in Congenital Ichthyosis:

Are They Effective?

This series identified subsets of congenital ichthyoses that may respond to biologics and will help with the design of future clinical trials of biologics for congenital ichthyoses. Read more here.

Nutraceuticals: A Boost for Skin Health

At South Beach Symposium 2025, Glynis Ablon, MD, a board-certified dermatologist based in Manhattan Beach, California, and an associate clinical professor at UCLA, gave a talk titled, “Nutraceuticals, Supplements, and More.” During the presentation, Ablon emphasized the critical role of nutrition in dermatology and urged clinicians to have these conversations with their patients. Read the article here.

Cardiac Issue in an Adolescent

with X-Linked Ichthyosis

Supraventricular arrhythmias have been reported in XLI; however, ventricular arrhythmias and sudden cardiac arrest have not been previously documented in adult males with STS deletions. Read the article here.

One Pager Info about FIRST

If someone reaches out to you online or the phone to inquire about FIRST, please feel free to share this "one-pager" with them.

Thank you! Click here.

March Breathing Class

This class is open to all ages and skill levels. Click to register and attend live or receive a recording.

Monday 3/24/25, 11am EST 15 min

Somatic Breathing, Sacha Schenker

Deadline to Apply is Today 3.31.25

If you are planning to attend trade school or college in the fall and are affected with ichthyosis, you can apply for a scholarship. Read more here.

Research

Quoin Clinical Trial

Exciting news! Quoin has announced early results for their #NethertonSyndrome clinical trial. They need more patients ages 14 & up to continue this important research! There is an option to stay on current medications. Learn more + enroll here.time only" or "only 7 remaining!"