FIRST

Woman with Harlequin Ichthyosis Delivers a Healthy Baby Boy!
May 25, 2013 - First known case of a woman affected with Harlequin Ichthyosis Giving Birth Read More

Paying It Forward
May 24, 2013 - I have devoted my professional life to the care of children in hospitals, and I know that this careerVilas callout-1 choice was no accident. Read More

Testimonial Dinner Honoring Dr. Amy Paller Planned for July
May 20, 2013 - As one of our most dedicated physicians on our Board of Directors and Medical & Scientific Advisory Board, Dr. Paller is so deserving of this honor. Read More

Yale Conducting Study of a New Topical Medication
May 7, 2013 - A clinical study to investigate a new topical medication for patients with Netherton syndrome will be conducted at Yale University and Saint Louis University Read More

Patient Support Forum Planned for Dallas
May 2, 2013 - This one-day meeting includes a medical discussion, research update, and product sharing. Read More

May is Ichthyosis Awareness Month!
May 2, 2013 - From coast to coast, many members will be holding exciting awareness and fundraising events. Read More

Only Skin Deep
May 1, 2013 - My interests, my relationships, my compassion, my laugh are among the many things that define me. Read More

FIRST to Know Conference Calls Planned
April 20, 2013 - It is wonderful to have individuals talking to one another, sharing tips, and sharing stories and challenges. Read More

Our Little Spitfire
May 3, 2013 - Our dermatologist told us about FIRST right away and they connected me with some other families affected by Harlequin, which has proved to be an incredible resource during this journey. Read More

Enjoy the Life You Have Been Given
May 6, 2013 - I remember thinking how can I do this? What does the future hold? Why us? Read More

Life and God Have Been Very Good to Me
May 8, 2013 - I have a very dedicated mother, a wonderful father and a great brother. Read More

Twice the Fun
May 10, 2013 - Every two years there is an ichthyosis conference somewhere. Like last year my mom and I went to Denver. Every two years I get super excited because trips are so fun! Read More

A New Beginning
May 13, 2013 - "...pursue the dreams that have taken root in your heart. It's never too late to change." Read More

Losing the Fear of Never Being Loved
May 15, 2013 - I know that I am very blessed. I was given every opportunity to grow up as normal as possible. My parents encouraged me to do and try anything that I wanted to do. Read More

We Have Come to Embrace Ichthyosis…
May 17, 2013 - It could have been so much worse and we have come to embrace ichthyosis for what it is. Read More

Ichthyosis – A Part of Who I am
May 20, 2013 - "Having ichthyosis makes me special. It's just part of who I am." Read More

An Unstoppable Spirit
May 22, 2013 - He is a fabulous, bright, outgoing young boy of 7+ years who has taught me the meaning of acceptance and perseverance. Read More

Never Letting Go
April 26, 2013 - “You cannot judge someone by what has happened to them or what they were born with”, he said, “the second I met her, I wasn’t letting go.” Read More

Tapping Local Media for Grassroots Events
April 19, 2013 - any members of the FIRST community are enthusiastically raising awareness by planning unique and exciting events throughout the entire month. Read More

Can a cup of tea change your life?
April 11, 2013 - For my very first article at FIRST, I decided to write something related to one of our current fundraising efforts. Read More

FIRST's Executive Director Attends the Derm Nurses Association Convention
April 8, 2013 - Attending the Dermatology Nurses Convention this past weekend was just another reminder of the old adage “It takes a village.” Read More

FIRST Welcomes Our Communications Director!
April 3, 2013 - I am delighted to be joining the team this week in my new role as Communications Director. Read More

President Obama Signs Continuing Resolution. Now what?
April 1, 2013 - The bill included a small increase for medical research at the National Institutes of Health ($71 million). Read More

Young woman with Harlequin ichthyosis is expecting her first baby!
March 22, 2013 - Stephanie Turner shares her journey and her joy at expecting her beautiful baby boy. Read More

Tommy's Stadium Tour
April 8, 2013 - Tommy, MLB's Biggest Little Fan is touring ballparks across the United States! Read More

Jean Pickford's Trip to the AAD Annual Meeting
March 18, 2013 - Each year, FIRST Executive Director Jean Pickford travels to the American Academy of Dermatology meeting. This year's event was held in Miami Beach. Read More

Summer Camp Dates are Set!
March 15, 2013 - Camp Discovery and Camp Wonder offer summer fun for children! Read More

Evening Planned to Honor Renowned Physician Dr. Amy Paller
March 12, 2013 - FIRST is very proud to honor Dr. Paller at our 8th Annual Testimonial Dinner Read More

Navigating the School System
March 11, 2013 - I have been a teacher for 25 years, so it shouldn't have been a big deal when my son entered kindergarten, but it was. Read More

Meeting People in a New Way
March 7, 2013 - The Foundation's FIRST to Know conference calls were buzzing with excitement as members had the opportunity to exchange product and care ideas. Read More

The Facts About Ichthyosis
February 25, 2013 - FIRST created information dispelling the myths associated with ichthyosis for members of the media as a quick reference. Our friends and members can also make use of this. Read More

Vanessa's Story
February 21, 2012 - When you look different from the general public it can be very lonely. Now I feel like I have a huge community of people that understand what I’ve experienced and how I feel. Read More

What is Your Itch Tip?
February 18, 2013 - Members and friends are always seeking tips for managing their skin. With the winter weather, skin becomes even more itchy. Read More

Movie Filmed at President's Home and Radio Interview Create Awareness for FIRST
February 14, 2013 - When Mike Briggs was approached by a scouting crew to use his home on Lake Lanier in Gainesville, Georgia for an upcoming movie, the answer was simple. Read More

FIRST has the answers to your questions!
February 11, 2013 - There are so many questions about ichthyosis and its affects. FIRST answers many of your questions and those of your family and friends. Read More

Skin Disease Research is Alive and Thriving at NIAMS
February 7, 2013 - My role on the Council is to represent patients when discussing programs, projects, and future initiatives spearheaded by NIAMS. Read More

New 2013 Health Planners Are Available From the NIH
February 4, 2013 - NIAMS, part of the NIH, has launched a multicultural outreach initiative about the availability of NIH resources to help people with conditions of the bones, joints, and skin. Read More

The Skin I’m In
January 24, 2013 - Thankfully for me, with the help of family members like my older sister, cousins, and my best friend, I’m learning how to accept the skin that I’m in. Read More

Photo Contest Leads to Awareness
January 18, 2013 - I never considered that this would be an opportunity for awareness of ichthyosis. Read More

Ichthyosis and Dogs
January 14, 2013 - Throughout the year, FIRST receives a number of emails from dog owners trying to find help for their dog affected with ichthyosis. Read More

Patient Support Forum Dates Posted
January 11, 2013 - One-day meetings to connect with members in your region. Read More

A Dream Fulfilled with Hard Work
January 10, 2013 - Valerie is in inspiration to everyone. With hard work, determination, and a positive attitude, you can accomplish whatever you put your mind to. Read More

2013 Research Grant Application Now Available!
January 10, 2013 - The deadline to submit LOI to the Foundation is February 20, 2013. Read More

Yoga for Your Skin
January 7, 2013 - Yoga is widely recognized as a practice that will build muscle, increase joint flexibility, improve core strength, relax the overactive mind, and release tension. Read More

FIRST Announces Board of Directors for 2013
January 1, 2013 - FIRST is lucky to be one of the fortunate nonprofits that has had years of strong leadership and commitment by many dedicated members of our Board. Read More

FIRST response to the “Lucas Moura” Community Page on Facebook of Harlequin ichthyosis baby
December 29, 2012 - In response to the photo taken from FIRST’s website of a baby affected with Harlequin Ichthyosis, FIRST responds to the “Lucas Moura” Community Page on Facebook. Read More

Making New Year's Resolutions
December 27, 2012 - With the new year approaching, we start thinking about the ways we want to improve our lives by getting rid of bad habits, starting good habits, or a combination of both. Read More

Stay Healthy this Holiday Season!
December 10, 2012 - No, I will not ask you to make grandma take the cream out of her famous mashed potatoes. Nor will I ask you to eat diet jello instead of your mom’s homemade pie. Read More

No Longer Alone
December 6, 2012 - I was born with a rare skin disease, ichthyosis vulgaris. Dealing with this every day is difficult and tiresome as my skin does not function normally. Read More

What is the connection between essential fatty acids and ichthyosis?
December 3, 2012 - This work explains why, in healthy skin, the essential fatty acid cannot be replaced by other lipids and why its oxidation is important in maintaining a normal skin barrier. Read More

Planning a fundraiser can be very rewarding
November 29, 2012 - FIRST will work with you every step of the way, from providing you with awareness materials, to helping to publicize your event, to even suggesting ideas for the event itself. Read More

Getting it all: How to make the most of your doctor's visit.
November 19, 2012 - For those affected with ichthyosis or any chronic condition that requires frequent visits to doctors and specialists, you want to make the most of your doctor's appointments. Read More

FIRST to Know calls are a great way to connect!
November 15, 2012 - When was the last time you picked up the phone to talk to someone; just to check in, see what is going on? Read More

Sequestration – What Is That And What Does It Mean To Me?
November 5, 2012 - Sequestration is the term used to describe the automatic spending cuts that will go into effect on January 2, 2013 unless Congress acts to stop them. Read More

Study Estimates Number of Ichthyosis Patients in US
October 31, 2012 - There are accepted incidence figures for common forms of ichthyosis, but figures for the incidence of rarer forms of ichthyosis have been approximations. Read More

Tips for Bullying Prevention
October 25, 2012 - Navigating the social situations that present themselves with children at school can be tricky even on a good day. Read More

PCORI Seeks Specific Research Questions from Patients and Stakeholders
October 16, 2012 - The Patient-Centered Outcomes Research Institute (PCORI) wants to know what health care question or decision you may be facing. Read More

Skin Advocate App for iPhone is Available!
Allows dermatologists to quickly provide patients with support group information. Read More

Study for a New Topical Medicine
September 27, 2012 - Galderma is sponsoring this study at Northwestern University in Chicago, Illinois. Read More

Ichthyosis and Hearing Loss Survey
September 27, 2012 - Here's your opportunity to help us better understand how ichthyosis affects your hearing. Read More

Calling All Ichthyosis Patients - Gene Discovery Opportunity
September 27, 2012 - Dr. Keith Choate and his team from Yale University are hosting a clinical and genetics study dedicated to an increased understanding of ichthyosis. Read More

Nutrition and Ichthyosis
Because the skin is the largest organ of the body and because it has a very large surface area in contact with the environment, what happens to the skin has a significant impact on the whole body. Read More

New information on Pathogenesis-Based Therapy
September 6, 2012 - Although the scaling that characterizes ichthyosis often occurs as the body's attempt to provide a better barrier against water loss and protection from the outside Read More

2012 Family Conference Highlights
FIRST’s 17th Biennial National Family Conference was held in Denver, Colorado over the weekend of June 22-24. Read More

Treating Cuts & Scrapes
Like any child, those with ichthyosis are likely to get occasional cuts and scrapes. Read More

Treating Ichthyosis
Because ichthyosis is a life-long condition, and because there is no cure, the goal of treatment is to alleviate symptoms and relieve discomfort. Read More

FIRST Member hosts online sales to benefit the Foundation
Grandmother of affected boy operates a shop on etsy.com. Read More

FIRST's Board of Directors Meet in Philadelphia
The Foundation for Ichthyosis & Related Skin Types, Inc.™ Board of Directors gathered in Philadelphia over the weekend of November 5-6, 2011. Read More

FIRST's Executive Director Joins CSD members in Washington, DC
FIRST joins members of the CSD at the NIH campus. Read More

News and Events