Seattle Meet-Up 2023
FIRST held its third 2023 patient meet-up in the Seattle-Tacoma area at the end of September.
17 people gathered to meet, share skin care tips, learn and give support. Prior to the meeting, a few attendees had never met another with ichthyosis – ranging from a 78-year-old to a newly diagnosed 8-year-old. Dr. Heather Brandling-Bennett, from Seattle Childrens Hospital, presented an overview of ichthyosis and hosted an engaging discussion. Conversations then continued over a delicious lunch. Other topics for the day included what to expect when participating in a clinical trial and why it’s so important to do so. The group, most of whom had ARCI or XLI ichthyosis types, also discussed Timber’s current Phase 3 Ascend study for ARCI and XLI.
Many exchanged contact information so that they could continue to support each other moving forward. These meetings are just as important for the FIRST staff as they are for our members. Everyone, staff included, was all ears during a tips & tricks sharing session where each person shared the three things they considered most important to their skin.
Participants received Beiersdorf products in addition to FIRST materials.
FIRST will be scheduling meet ups next in 2025.
Next year, we hope to see you all at the FIRST Conference in Albuquerque, June 28 – 30, 2024!