News and Events

Latest News

Dane's Friends for FIRST Concert to be held in September!
August 19, 2014 - The third annual Dane's Friends for FIRST Concert will take place at the Heritage Theater in Campbell, California. Read More
Dane's Friends for FIRST Concert to be held in September!
FIRST Testimonial Dinner to be held in September
FIRST is proud to honor Dave and Valerie Scholl at a Testimonial Dinner at The Heritage Club in Mason, Ohio. Read More
FIRST Testimonial Dinner to be held in September
Highlights from the 2014 National Family Conference in Indianapolis!
July 1, 2014 - The conference, held in Indianapolis, was filled with workshops, panel discussions, entertainment, and special opportunities for connection, was an astonishing success! Read More
Highlights from the 2014 National Family Conference in Indianapolis!
News from Galderma Regarding Research Study
July 8, 2014 - An update to their research. Read More
News from Galderma Regarding Research Study
Announcement from GeneDX
June 5, 2014 - Congenital ichthyosis and related disorders of cornification of the skin are a clinically and genetically very heterogeneous group of genetic disorders. Read More
Announcement from GeneDX
Beach Run & Walk a Great Success!
May 15, 2014 - Ace in the Hole Foundation hosted its fifth annual Lido Beach Run/Walk at Lido West Beach on Long Island, New York. Read More
Beach Run & Walk a Great Success!
FIRST Member Featured on WebMD
May 6, 2014 - Courtney Westlake blogs about surviving and thriving. Read More
FIRST Member Featured on WebMD
Survey about therapy uncertainties in congenital ichthyosis
April 22, 2014 - Dr. Angela Hernández Martín from Madrid is asking for your help with a future study. The aim of the study is to identify existing major uncertainties in the treatment of ichthyosis. Read More
Survey about therapy uncertainties in congenital ichthyosis
Ear Related Symptoms Survey Results Published
March 23, 2014 - During 2012-2013, the doctors at Boston Children’s Hospital, conducted a pilot survey study to obtain information about ichthyosis and its ear-related symptoms. Read More
Ear Related Symptoms Survey Results Published
Tapping Local Media for Grassroots Events
March 23, 2014 - any members of the FIRST community are enthusiastically raising awareness by planning unique and exciting events throughout the entire month. Read More
Tapping Local Media for Grassroots Events
2014 RARE Disease Day Activities
March 13, 2014 - FIRST and our members worked hard creating awareness for rare disease. Read More
2014 RARE Disease Day Activities
The National Health Council’s 27th Annual Voluntary Health Leadership Conference
March 13, 2014 - The 27th Annual Voluntary Health Leadership Conference brought together nearly 80 senior staff and volunteer leaders from 32 of the NHC’s member patient advocacy organizations. Read More
The National Health Council’s  27th Annual Voluntary Health Leadership Conference
The National Health Council (NHC) Launches New Tools for Navigating the Health Care Marketplace
January 30, 2014 - Choosing a healthcare plan in the new marketplace can be tricky. However, finding a plan that is best suited for your health care needs is key to a healthy future. Read More
The National Health Council (NHC) Launches New Tools for Navigating the Health Care Marketplace
Change How You See. See How You Change.
January 27, 2014 - In his former career, Rick took photographs of what were considered “the world’s most beautiful people;” chic, striking images used in publications all over the world. Read More
Change How You See. See How You Change.
Diya & Aliya's Friends Skin Care Fund is now accepting applications!
January 7, 2014 - The fight against ichthyosis is not only medical but also financial. Daily treatment routines can be complicated by the ongoing costs of medical supplies and other aids. Read More
Diya & Aliya's Friends Skin Care Fund is now accepting applications!
A Passion for Patients, FIRST Goes to Yale
December 19, 2013 - FIRST is closely affiliated with a team of unique medical professionals, from universities and hospitals around the world, who are dedicated to the research of ichthyosis. Read More
A Passion for Patients, FIRST Goes to Yale
Galderma Publishes a Study of Lamellar Ichthyosis
December 9, 2013 - FIRST is excited to share that the enthusiasm of our participant members was overwhelming and the outcome produced a unique overview of life for individuals with lamellar ichthyosis Read More
Galderma Publishes a Study of Lamellar Ichthyosis
2014 Camp Discovery Dates are Announced!
December 4, 2013 - The American Academy of Dermatology's (AAD) Camp Discovery program is for children ages 8 - 16 who have a chronic skin disease. Read More
2014 Camp Discovery Dates are Announced!
FIRST Board of Directors Meet in Philadelphia
November 2013 - The weekend kicked off with a spirited day of discussion, planning, and a careful review of FY 2013’s successes, challenges, and lessons learned. Read More
FIRST Board of Directors Meet in Philadelphia
FIRST earns National Health Council Standards of Excellence Certificate
November 27, 2013 - The certificate was granted upon a review of FIRST’s adherence to the 43 standards of excellence adopted by the NHC’s board of directors. Read More
FIRST earns National Health Council Standards of Excellence Certificate
Topical Tazarotene for the Treatment of Ectropion in Ichthyosis
November 7, 2013 - Many individuals affected with ichthyosis cite ectropion – an abnormal eversion of eyelids – as one of the most cosmetically displeasing aspects of their skin disorder. Read More
Topical Tazarotene for the Treatment of Ectropion in Ichthyosis
FIRST Announces our YAWI Group!
September 3, 2013 - A YAWI is a Young Adult With Ichthyosis between the ages of 18 – 30. This is an important age as many life-altering decisions may be made during young adulthood. Read More
FIRST Announces our YAWI Group!
FIRST Member hosts online sales to benefit the Foundation
October 22, 2013 - Grandmother of affected boy operates a shop on etsy.com. Read More
FIRST Member hosts online sales to benefit the Foundation
It's Time to Do Something!
October 15, 2013 - The recent government shut-down has added yet another layer of challenges to the rare disease research community. Read More
It's Time to Do Something!
Friends for FIRST Concert a wonderful evening!
September 16, 2013 - The concert was the kind of community support that truly takes your breath away…and it was so moving when Eric Phelps told the story of its symbol. Read More
Friends for FIRST Concert a wonderful evening!
Congratulations to ISG!
August 26, 2013 - Winners of the National Lottery. Award for the Best Project in the Health Category Read More
Congratulations to ISG!
FIRST Honors Dr. Amy Paller
August 8, 2013 - One hundred guests joined FIRST, as we proudly honored Amy S. Paller, MS, MD, at a Testimonial Dinner at the University Club of Milwaukee. Read More
FIRST Honors Dr. Amy Paller
FIRST Night Fun at the Phillies!
July 9, 2013 - Friends and members of FIRST met in Philadelphia to cheer on their favorite teams, support FIRST, and make connections. Read More
FIRST Night Fun at the Phillies!
Recruitment Underway for Sjogren-Larsson Syndrome Study
June 12, 2013 - A research study on SLS to gather clinical information about its natural history and search for biomarkers (tests) that can be used to monitor future therapy. Read More
Recruitment Underway for Sjogren-Larsson Syndrome Study
Bathing Completes the Shedding Process…naturally.
June 10, 2013 - Bathing may be even more important to the shedding process, than previously considered. Read More
Bathing Completes the Shedding Process…naturally.
FIRST Announces 2013 UFIRST Scholar Recipients
June 7, 2013 - FIRST is proud to announce the nine 2013 scholarship recipients of the UFIRST Scholars Award. Read More
FIRST Announces 2013 UFIRST Scholar Recipients
Research on “Gene Therapy Topical Ointment” Continues
June 6, 2013 - Groundbreaking siRNA research, led by Dr. Amy Paller, has inspired new hope for silencing the underlying mutation of EI its changes to the skin surface. Read More
Research on “Gene Therapy Topical Ointment” Continues
Raising Awareness for Rare Disease…One Cape at a Time
June 3, 2013 - Brenna needs a superhero cape because she is truly extraordinary! Read More
Raising Awareness for Rare Disease…One Cape at a Time
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
Woman with Harlequin Ichthyosis Delivers a Healthy Baby Boy!
Yale Conducting Study of a New Topical Medication for Patients with Netherton Syndrome
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
Yale Conducting Study of a New Topical Medication for Patients with Netherton Syndrome
Only Skin Deep
May 1, 2013 - My interests, my relationships, my compassion, my laugh are among the many things that define me. Read More
Only Skin Deep
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
Our Little Spitfire
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
Enjoy the Life You Have Been Given
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
Life and God Have Been Very Good to Me
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
Twice the Fun
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
A New Beginning
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
Losing the Fear of Never Being Loved
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
We Have Come to Embrace Ichthyosis…
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
Ichthyosis – A Part of Who I am
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
An Unstoppable Spirit
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
Paying It Forward
Don't Let Others Determine Your Potential
May 29, 2013 - I was born with a collodion membrane that was filled with fluid. After draining the fluid, the doctors saw how red and scaly I was, so they rushed me to the ICU. Read More
Don't Let Others Determine Your Potential
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
Never Letting Go
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
Can a cup of tea change your life?
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's Executive Director Attends the Derm Nurses Association Convention
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
FIRST Welcomes Our Communications Director!
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
Jean Pickford's Trip to the AAD Annual Meeting
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
Navigating the School System
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
The Facts About Ichthyosis
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
What is Your Itch Tip?
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
Movie Filmed at President's Home and Radio Interview Create Awareness for FIRST
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
FIRST has the answers to your questions!
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
Photo Contest Leads to Awareness
January 18, 2013 - I never considered that this would be an opportunity for awareness of ichthyosis. Read More
Photo Contest Leads to Awareness
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
Ichthyosis and Dogs
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
A Dream Fulfilled with Hard Work
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
Yoga for Your Skin
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 Announces Board of Directors for 2013
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
FIRST response to the “Lucas Moura” Community Page on Facebook of Harlequin ichthyosis baby
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
Stay Healthy this Holiday Season!
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
What is the connection between essential fatty acids and ichthyosis?
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
Planning a fundraiser can be very rewarding
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
Study Estimates Number of Ichthyosis Patients in US
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
Tips for Bullying Prevention
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
PCORI Seeks Specific Research Questions from Patients and Stakeholders
Skin Advocate App for iPhone is Available!
Allows dermatologists to quickly provide patients with support group information. Read More
Skin Advocate App for iPhone is Available!
Ichthyosis and Hearing Loss Survey
September 27, 2012 - Here's your opportunity to help us better understand how ichthyosis affects your hearing. Read More
Ichthyosis and Hearing Loss Survey
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
Calling All Ichthyosis Patients - Gene Discovery Opportunity
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
Nutrition and Ichthyosis
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
New information on Pathogenesis-Based Therapy
Treating Cuts & Scrapes
Like any child, those with ichthyosis are likely to get occasional cuts and scrapes. Read More
Treating Cuts & Scrapes
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
Treating Ichthyosis

 



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