Member Story: Les A., Laura H., Make your own cream

eNews

August 31, 2024

If you'd like to share your story for a future edition of eNew, email Chris.

Member Update

Member Story - Les A., California

"I just checked my mail and found the letter on wills and trusts from FIRST. I was sorry to see my good friend Captain Joe Galluccio had passed on. We have been friends since 1999 when he came to the ichthyosis chatroom and the ichthyosis bulletin board. He had X-linked like me, and we comically debated the best ways to help our skin. His dermatologist was Dr. Eugene Van Scott from Philadelphia, who I consider the "Father of the Alpha Hydroxy Acid Movement" and a lifetime supporter of FIRST. Joe tried convincing me of the benefits of glycolic acid. I, of course, countered that Dr. Peter Elias, co-founder of FIRST, handed me a tube of Lac-Hydrin 12% lactic acid in his office in January of 1983, that took away my itch and allowed me to sleep." Read more here.

Laura H, Northlake, IL

Laura, after receiving a Volunteer of the Year award at our National Conference, has continued to educate medical students in the Chicago area. This time she spoke to medical students at Loyola Medical Center. Each talk, each awareness activity, helps our entire community learn about ichthyosis!

Learn how to advocate in your area.

Member Tip

Make Your Own Cream

Catherine's daughter Amelia was born with a collodion membrane and was diagnosed with EI. She started to experiment with recipes when Amelia was three to four months old. Watch what works for them.

News and Research

How to Support the Mental

Health of Patients With a Rare Disease

The shock of being diagnosed with a rare disease or having a child or a loved one with a rare disease can be overwhelming and requires a lot of adjusting, Dr. Freedman said. “It’s very disorienting to find yourself with a life that is different than the life you expected to have. Your needs are very unusual because of the unusual nature of the disease.

Financial Aid

Diya & Aliya Fund - to help alleviate some of the financial burden that may be facing families with affected children. This special fund is available for children under the age of 18 years around the world. Apply by October 31st here.

NORD's Caregiver Respite Program - NORD's Respite Program provides financial assistance to enable caregivers a break to attend a conference, event, or simply have an afternoon or evening away from caregiving. Read more here.

Product Discounts

CeraVe - Up to 80% off and free shipping

Person & Covey - Save up to 50% on your favorites, until 09/02/24

The Beginner's Guide to

Rare Disease

If you were just diagnosed with a rare disease or you are feeling you may remain undiagnosed as you continue to search for answers, you are bound to be wondering what can I do? At Global Gene's they often hear “there is no guide book for this”. It’s so hard to know where to begin to find more answers. Here are a few attempts to guide you suggested by some people who have been there.

Amazon Update

We are grateful to everyone who donated to FIRST via Amazon Smile over the years! That charity program has been discontinued.

To keep pace with changing times, FIRST will be earning commissions through a new Amazon program.

When FIRST shares product links, look for #commissionsearned. This is your signal that clicking the link will send commissions to FIRST. Everything you purchase within 24 hours on Amazon will earn FIRST commissions.

You can give it a try for yourself!

Check out this Aquaphor STICK for easy, mess-free application: https://amzn.to/4g1RqvY #commissionsearned