FIRST on the 1st

News and views from the FIRST office

January: New Beginnings
“Make friends with change.” -Ram Dass

As we begin a new year and a new decade, we are offered a fresh start for a disease that sometimes starts to feel like deeply ingrained daily challenge.

At the Office

FIRST is undergoing tremendous change. Within the space of the next 12 months, FIRST will name a new ED and a new Board President. We’ll join as a community for our National Conference, with more than double the financial aid than ever before, which is sure to change the impact of this life-changing gathering. On an even greater level, FIRST membership is expanding faster than ever before, while at the same time research in Ichthyosis is uncovering more, faster, than ever before.

While change can be daunting, uncomfortable, and exhausting, it brings with it powerful space for improvement. And, anyway, it’s unavoidable.

What Our Skin Can Teach Us

Our skin renews all the time and shows us the benefits of letting go. It’s practically a reminder of the NEED to let things go—that, as humans, we are meant to grow and change. To shed bad habits, to leave behind that which we have outgrown. With Ichthyosis, many of us experience a benefit of this skin turnover—wounds will heal faster. The metaphor is a powerful reminder of the strength we acquire through that which we overcome.

Never Stop Trying New Things

Our skin is constantly changing—so much that for some of us, we effectively lack fingerprints. And yet, often, the way we treat our skin stays the same. For example, after 20 years of the same foot care regimen, I recently heard from another member that I ought to try it when my feet are wet. I had been stuck in my own zone so long, I hadn’t asked the community for help, I hadn’t imagined there was a better way to do it—and it was way better. I’m reminded of the way my late grandmother never stopped trying new treatments as she cared for my siblings and I.

My grandma’s approach is shared by the FIRST Board and staff, today’s researchers, clinicians, and pharmaceutical pros—we won’t stop trying new things. I can honestly say more people are caring about Ichthyosis than ever before. We are fighting more than ever to improve treatments and find cures for chthyosis.

So, here’s to 2020!

Here’s to change.
-Denise Gass, Interim Director