News and Events

Latest News

2016 National Conference Reservation Information
It’s not early to start planning for the 2016 National Family Conference-San Diego! We’ve already selected a city and location. Read More
2016 National Conference Reservation Information
FIRST Goes to Camp Horizon!
August 21, 2015 - FIRST staff members volunteered at Camp Horizon and joined the amazing staff and volunteers in Millville, PA for an exciting day of games and crafts. Read More
FIRST Goes to Camp Horizon!
National Conference Financial Aid Application Now Available
August 12, 2015 - A financial aid fund is available for families to apply for financial assistance to attend FIRST National Conferences. Funding is limited. Read More
National Conference Financial Aid Application Now Available
Diya & Aliya's Friends Skin Care Fund is now accepting applications!
August 1, 2015 - 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!
Newborn Study at Yale University
July 30, 2015 - A study of newborns with ichthyosis. Read More
Newborn Study at Yale University
Blood Sample Collection of Individuals with Ichthyosis
July 30, 2015 - As part of a clinical research study, we are collecting blood samples from volunteers who have been diagnosed with ichthyosis. Read More
Blood Sample Collection of Individuals with Ichthyosis
FIRST Testimonial Dinner to Honor Kelly and Mark Klafter
July 25, 2015 - Kelly and Mark Klafter will be honored at the 2015 Testimonial Dinner for their unprecedented support of FIRST. Read More
FIRST Testimonial Dinner to Honor Kelly and Mark Klafter
New Research Update from FIRST Grant Recipient, Dr. Bob Rice
July 21, 2015 - Structural and BioChemical Changes Underlying a Kera-Derma like phenotype in mice lacking suprabasal AP1 transcription factor function. Read More
New Research Update from FIRST Grant Recipient, Dr. Bob Rice
Aldeyra Therapeutics Opens Phase II of Clinical Trial
July 13, 2015 - The study is being conducted at the University of Nebraska Medical Center with FIRST MSAB member, Dr. Bill Rizzo as the Principle Investigator. Read More
Aldeyra Therapeutics Opens Phase II of Clinical Trial
2015 UFIRST Scholar Recipients Announced
June 5, 2015 - FIRST is proud to announce this year’s 11 scholarship recipients from the UFIRST Scholars Program. Read More
2015 UFIRST Scholar Recipients Announced
Another Successful Beach Run & Walk in New York
May 25, 2015 ~ The event was held in honor of 1st Lt. Michael LiCalzi who died in action in Iraq on May 11, 2006. Read More
Another Successful Beach Run & Walk in New York
The Facts About Ichthyosis
April 29, 2015 - 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
Grand Opening of Charles C. Gates Biomanufacturing Facility
April 24, 2015 - An Update from Dr. Dennis Roop, Director, Charles C. Gates Center for Regenerative Medicine Read More
Grand Opening of Charles C. Gates Biomanufacturing Facility
Meet 2015 FIRST Research Grant Recipient, Dr. Brittany Craiglow
April 9, 2015 - Dr. Craiglow was awarded a $50,000 research grant for her collaborative study of newborn and early childhood complications that accompany the ichthyoses Read More
Meet 2015 FIRST Research Grant Recipient, Dr. Brittany Craiglow
Patient Support Forums are Taking Place Throughout the Country!
March 19, 2015 - Come out for a day of networking with other families affected by ichthyosis. Meet other families in your area and learn how to build a stronger network in the ichthyosis community. Read More
Patient Support Forums are Taking Place Throughout the Country!
Boston Children's Hospital Conducting a Harlequin Ichthyosis Study
February 9, 2015 - Boston Children's Hospital is conducting a medical records study of people with harlequin ichthyosis. Read More
Boston Children's Hospital Conducting a Harlequin Ichthyosis Study
Latest Research on Treatment for Infection Related to Keratitis-Ichthyosis-Deafness (KID syndrome)
January 20, 2015 - KID syndrome is a rare hereditary cornification disorder resulting from mutations in connexin 26, a protein important for intercellular communication. Read More
Latest Research on Treatment for Infection Related to Keratitis-Ichthyosis-Deafness (KID syndrome)
FIRST Research Grant Awarded to Dr. Ryan O’Shaughnessy, UCL Institute of Child Health, London, UK
December 16, 2014 - The research specifically focuses on understanding the mechanisms that cause scaling, and subsequently increasing the options for treatment. Read More
FIRST Research Grant Awarded to Dr. Ryan O’Shaughnessy, UCL Institute of Child Health, London, UK
Participants needed for “Itch” Study at Temple University
December 10, 2014 - The purpose of this research study is to examine the genetic differences involved with itch in atopic eczema, psoriasis, and ichthyosis patients. Read More
Participants needed for “Itch” Study at Temple University
The Latest Update from the Gene Discovery Program at Yale…
December 8, 20014 - Thanks to advances in next-gen sequencing, a number of studies in recent years are beginning to unravel the role of de novo mutations in human disease. Read More
The Latest Update from the Gene Discovery Program at Yale…
Doctors Connect Online to Diagnose and Advise
November 2014 - Telehealth is the delivery of health care using technology to link patients and care providers in separate locations. It's a promising way to deliver care where access is a problem. Read More
Doctors Connect Online to Diagnose and Advise
PeDRA is Growing Strong
November 13, 2014 - It is the PeDRA mission to pursue groundbreaking research so that we might discover underlying causes, better treatments, and one day, cures. Read More
PeDRA is Growing Strong
Jean Pickford Goes to Capitol Hill for 2014 AADA Legislative Conference
September 17, 2014 - With more than 100 dermatologists, advocacy representatives, and political insiders, the conference is the foremost meeting focusing on political issues that affect dermatology. Read More
Jean Pickford Goes to Capitol Hill for 2014 AADA Legislative Conference
The Benefits of Genetic Testing
September 17, 2014 - genetic testing is a means of looking at a person’s DNA to identify the specific mutation that causes their condition Read More
The Benefits of Genetic Testing
A Community Unites at Dane’s Friends for FIRST Concert
September 15, 2014 - It was an evening of music and magic, wrapped in the bond of a community that cannot be broken. All of the attendees had been personally touched by the story of Dane Phelps. Read More
A Community Unites at Dane’s Friends for FIRST Concert
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
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
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.
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
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 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!
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 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.
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
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
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
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?
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
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
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
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
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

 



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