Board of Directors
The Foundation for Ichthyosis and Related Skin Types, Inc.® (FIRST) is governed by a volunteer Board of Directors dedicated to supporting our mission with their time and talents. FIRST's Board members are active participants in the various activities of the Foundation and are representative of our diverse population locally and nationally.
The 16-member Board of Directors has included individuals affected by various forms of ichthyosis, parents of affected children, dermatologists and researchers in the field of ichthyosis, as well as attorneys, educators, psychologists and corporate individuals. FIRST has been fortunate to have nationally known dermatologists, including a past president of the American Academy of Dermatology, sit on its board. The Board of Directors meet quarterly via Teams, and at the biennial National Conference. The Board is responsible for monitoring the results of FIRST's operations and supports the achievement of FIRST's ambitious strategic goals through standing, special (or ad hoc) and advisory committees.
Individuals who would like to express an interest in serving on FIRST's Board of Directors should contact the Board Development Committee for more information.
2024 FIRST Board of Directors
Beth Hampshire
Board Chair
Fishers, Indiana
Deputy Controller at City of Fishers
Adult affected with ichthyosis
Brian Stern
Vice Chair
Lancaster, Pennsylvania
Regional Sales Manager, Keystone Custom Homes
Parent of affected daughter
Jason Thogmartin
CFO
Carrollton, Georgia
Chief Operational Risk Officer, Santander US
Adult affected with ichthyosis
As an affected individual I know first-hand the importance of having a strong and active community to provide support to all affected individuals. FIRST plays an essential role in bringing the community together and I am fortunate to be able to support the organization in furthering that mission.
Bailey Pretak
Secretary
Beaver, Pennsylvania
Music & Library Teacher at Rhema Christian School Motivational Speaker
Adult affected with ichthyosis
I was born with ichthyosis and very early on my grandma and mom were heavily involved in raising awareness about my skin and fundraising for FIRST, so I just fell into their footsteps. But the year I was really impacted with all that FIRST means to me was the Denver conference. I realized that I had an entire younger generation looking up to me and from that moment forward, I’ve done everything I can to give back to this organization to help those kids. I want them to be more confident and stronger than I was at their age, to encourage them that they can lead regular lives, and to show them that they can chase after their dreams.
Sarah Asch, MD
North Oaks, Minnesota
Pediatric Dermatologist, Hometown Pediatric Dermatology, PLLC
As a physician who helps care for people affected by rare diseases, I know that the richest and best conversations are between families with similar challenges. FIRST facilitates these meaningful interactions and has matured into a place of support, education and advocacy that is driven most by people who share the lived experience of life with ichthyosis. I love working with FIRST in that it brings me back to my roots of what brought me into medicine in the first place, the ability to help translate medicine into English, and use my acquired knowledge to assist people to achieve their desired goals in quality of life. I am honored to support FIRST’s mission by serving on the Board.
Jackie Barrett
Overland Park, KS
Work Comp Renewal Manager, Risk Innovations
Adult affected with ichthyosis
I am an individual with ichthyosis. I am involved with FIRST to support individuals and families affected by ichthyosis. The first time I met others affected with ichthyosis outside of my family member, I felt like I found an additional family. That feeling has led me to want to be a part of the FIRST organization to help others affected by ichthyosis and welcome them to the family.
Jeff Blake
Novato, California
Communications Director, Ultragenyx
Parent of affected daughter
When our daughter was diagnosed, FIRST was there, providing us an essential support system and a welcoming community. After experiencing our first FIRST Conference in 2022, I now have a greater appreciation for the ways FIRST will be there for our daughter throughout her life. I’m honored to serve on the board of directors and lend my experience in healthcare communications and government relations to help ensure FIRST will continue to be there for generations to come.
Jolie Cina
West Caldwell, New Jersey
Director of Marketing, Pinnacle Promotions
Parent of affected daughter and son
I am the proud mother of 2 incredible children, Portia and Myles, that were born with ichthyosis en confetti. FIRST has meant so much to us over the years in terms of support, resources and community. I wanted to be able to give back and help younger parents as I was helped as a new parent.
Brittany Craiglow, MD
Fairfield, Connecticut
Pediatric Dermatologist
Mark Evans
Hydes, Maryland
President, Mr. Handyman of Northern Baltimore County
Parent of affected daughter
I got involved to help support FIRST. My family and I have found FIRST to be such a wonderful and passionate community that provides vital resources, support and connections to our members. As we move forward, I am enthusiastic about ensuring FIRST is a well functioning organization that is positioned to serve and support all of our members both now and in the future.
Tejal Kamdar
Oakland, California
Biopharmaceutical Sales and Marketing, Sage Therapeutics
Parent of affected daughter
FIRST has been a tremendous support to our family from our daughter’s diagnosis to finding ongoing support from a giving community. From a biopharmaceutical perspective, many affected patients go to great depths to find therapeutic solutions for their set of symptoms. To date there are not any specific therapies that are specifically FDA indicted for Ichthyosis. By partnering with the biotech industry that focuses on rare diseases and conditions may help forge new research pathways that are relevant to our Ichthyosis community.
Sean McTernan
Lower Gwynedd, Pennsylvania
Principal, Regional Investment Consultant at Brown Advisory
Parent of affected daughter
FIRST has played a special role in our lives, particularly so in the early days of our youngest daughter's life, when few others could provide answers or perspective regarding ichthyosis,” he said. “We are sincerely appreciative of the role FIRST plays in supporting and advocating for those in the ichthyosis community and are happy to give back to the organization which has done so much for our family.
Jennie Wilklow-Riley
Highland, New York
Parent of affected daughter
I got involved with FIRST after my daughter was born with harlequin ichthyosis in 2017. FIRST was so helpful in getting me all of the resources I needed and I wanted to be able to help give other parents that much needed help. In 2019 I started my own foundation to help people with Ichthyosis around the world and FIRST was there again to help me make that a success. I am excited and honored to serve on the Board of Directors.
Fulvia Veronese
Bethesda, Maryland
Adult affected with ichthyosis
Fulvia is affected by ichtyosis and a retired scientist from the National Institute on Allergy and Infection Diseases at the NIH. She is keenly interested in helping this wonderful foundation flourish and advance its commitment to research on effective treatments for the different types of ichthyosis.
Lowell Wright
McKeesport, Pennsylvania
Bulk Customer Representative, Pepsi Beverages Company
Adult affected with ichthyosis
I want to help the affected who feel alienated and alone. I say this because I felt that way for a long time. I personally never met another affected individual until I was 41 years old. So, for 41 years I never felt as if anyone else was like me, could truly understand me, understand my perspective, or the things that I went through in my daily life. In short, I never really fit in. No matter how close someone was to me, it still felt as if there were some major disconnects in the relationship. But after joining FIRST; after I began to get involved; and after I opened myself up to the idea that there were people who can understand me, I began to recognize that there was actually an entire community full of people who did understand because they experienced many of the things that I did. The more I got involved, the more I began to change my perspective about some things in my life. It is my hope to help others who might feel that way. I want to help them realize that they are part of the community also. I believe that as a community we must support each other. I’m going to do as much as I can to make that happen.
Daniel J. Siegel, Esq.
General Counsel
Havertown, Pennsylvania
Principal, Law Offices of Daniel J. Siegel, LLC
Parent of affected sons
I discovered and joined FIRST after both of my sons were diagnosed with X-linked ichthyosis. Shortly after joining, FIRST contacted me in 1997 and asked me if I would consider becoming counsel to the organization, an offer I accepted. Since 1997, I have served as FIRST's general counsel without compensation.
Board Members Emeriti
Leonard M. Milstone, MD
New Haven, Connecticut
Professor Emeritus, Yale University
Amy Paller, MS, MD
Chicago, llinois
Walter J. Hamlin Professor and Chair, Department of Dermatology; Professor of Pediatrics; Director, Skin Disease Research Center, Northwestern University Feinberg School of Medicine,
My passion is genetic skin conditions (my Masters degree is in genetics, I trained in both Pediatrics and Dermatology, and my postdoctoral fellowship was focused on genodermatosis research. I have been on the MSAB for more than 25 years and continue to focus on ichthyosis at the center of my clinical and research work.
David Scholl, PhD
Mason, Ohio
grandfather of affected individual
Mary L. Williams, MD
San Francisco, California
Clinical Professor of Dermatology and Pediatrics, UCSF-School of Medicine
