Foundation for Ichthyosis & Related Skin Types, Inc.

10/02/2025

📣 Exciting news! Registration is now OPEN for FIRST’s National Conference in Minneapolis this June! 🎉

💻 Register here: https://www.firstskinfoundation.org/minneapolis-registration

💙 Financial aid applications are also available to help make the conference accessible for all: https://www.firstskinfoundation.org/minneapolis-financial-aid

We can’t wait to come together with our community for connection, learning, and support. ✨

09/30/2025

We're thrilled to share significant updates from FIRST, including the awarding of the NRSA Fellowship, upcoming events like the National Conference featuring a dynamic keynote speaker, and the launch of essential funding opportunities. Your voice matters—participate in our Patient Voice Survey by October 20. Together, we advance knowledge and support for ichthyosis and related skin disorders.

https://conta.cc/4nOTEBK

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Working Adults, Research, Grassroots Success       September 30, 2025 Member Update - Stefanos Koutsoukos Also a member of FIRST's Res

09/29/2025

📢 BIG NEWS!

FIRST is thrilled to announce the recipients of our 2025 Research Grant Program (RGP)! 🎉

This year’s grants support cutting-edge projects that aim to:
🔬 Uncover how mechanical stretch impacts epidermolytic ichthyosis (Xiaomin Bao)
🦴 Evaluate bone health and osteoporosis risk in EDD patients (Cheryl Bayart)
🧬 Advance understanding of X-linked ichthyosis with a new mouse model (William Davies)
⚙️ Explore the calcium-sensing receptor in acantholytic genodermatoses (John Edminister)
🧪 Use spatial transcriptomics to study scaling and redness in EDD (Keith Choate & Amy Paller)

These studies bring us closer to better treatments—and one day, cures—for ichthyosis and related disorders. 💙

👏 Congratulations to all of the researchers, FIRST's Research Committee and thank you to our community for making this possible!
https://www.firstskinfoundation.org/news/first-research-grant-program-advancing-knowledge-in-ichthyosis-and-related-disorders

09/25/2025

🎉 Exciting News! 🎉

FIRST is thrilled to announce that Jeff Civillico — entertainer, facilitator, and dynamic keynote speaker — will be joining us at FIRST's National Conference in Minneapolis next June!

Get ready for inspiration, laughs, and unforgettable moments. You won’t want to miss this! ✨

Registration opens on our website on October 1st!

https://www.firstskinfoundation.org/minneapolis-keynote-emcee

09/23/2025

Yale Students Swim For Ichthyosis

Dr. Choate's lab at Yale has made so many significant contributions to the ichthyosis community. Last month, a team of students decided to join forces and swim for FIRST! They swam 15 miles in open water, about the equivalent of a marathon! Together they raised $2,925!!!!

09/22/2025

Apply for a Rare Disease Week 2026 Travel Reimbursement

Rare Disease Week on Capitol Hill will take place February 24–26, 2026, bringing together advocates from across the country to share their stories and make their voices heard by Members of Congress. Whether you are new to advocacy or a seasoned advocate, all are welcome to join.

To help make participation possible, the EveryLife Foundation for Rare Diseases is offering a limited number of travel reimbursements for individuals and caregivers attending Rare Disease Week.

Applications will close on Friday, November 7.

APPLY FOR TRAVEL REIMBURSEMENT https://www.research.net/r/DVJX9JY?_hsenc=p2ANqtz-8wHZCQOCioVEgOe37QvQ_6ccW2fDSOpPIw-BdztpRNNR_uMLX_Fh5WYnph1uuJ6_ziUBBVXLisV0XXkCwGzK7BbH6k8iJtI8tmMEIaQAucXvCZwY8&_hsmi=381384935

09/19/2025

A Third Successful Year!

The Schlitt and Goff families hosted their third Annual Co****le Tournament benefiting FIRST.

These rockstar Michganders welcomed 100+ people for the fully catered event, which drew people from across the region!

Several members of FIRST rallied to support the event. It was as much about community as it was fundraising! 8 affected people were present...from 3 months old to 60+!

Donations are still coming in...stay tuned for the total.

09/18/2025

Last Chance!

If you'd like to apply to become the next National Conference speaker, please take a look at the requirements and apply here https://www.surveymonkey.com/r/GZQQCXH

09/17/2025

🌍🤝 Collaboration in Action!
Last week, Denise Gass (FIRST), Janice Schwartz (PC Project), Helen Lill (EI Cure Project), Ruth Anton (ICHTHYP), Karin Veldman (Ichthyosis Netwerken), and Mandy Alwin (ISG) attended and presented at the EADV (European Association of Dermatology & Venereology) Congress in Paris.

These passionate advocates and leaders came together to share knowledge, raise awareness, and strengthen international collaboration for the ichthyosis and rare skin disease communities. ✨💙

09/17/2025

Read the latest issue of FIRST's eNews https://conta.cc/47J5kBv

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Fundraiser, Portia's Voice, Research       September 16, 2025 eNews Member Story - Katia, CHILD I’ve been searching for others with i

09/16/2025

Familiarize yourself with the new naming convention for ichthyosis and related skin types. Thanks to the Ichthyosis Support Group for putting this together. https://www.ichthyosis.org.uk/ichthyosis-and-epidermal-differentiation-disorders-what-the-new-term-means-for-you

09/16/2025

MI Teen Raises $4,755

How many highschoolers can say this?!?

Adriana Yost of Canton, MI, decided to make her high school graduation a fundraising opportunity. In lieu of gifts, she asked for donations to FIRST, in honor of her cousin Logan Schlitt, a 4 (and a half!) year old with lamellar ichthyosis.