The National Foundation for Ectodermal Dysplasias (NFED) recognized several individuals and organizations this summer for their outstanding contributions to our ectodermal dysplasias community. The awards were given as part of our 45th anniversary celebration at the Family Conference on Thursday, July 23.
We honor and thank each of them for their commitment to making life better for individuals affected by ectodermal dysplasias. Here are this year’s award winners!
Rising Star Award – Emily
Emily is a 15-year-old Alaskan who has been advocating for the Ensuring Lasting Smiles Act since she’s six years old. Yes, six! She has bravely and articulately shared her story of being affected by hypohidrotic ectodermal dysplasia with everyone from classmates and reporters to legislators on Capitol Hill. And she does it all with a beautiful smile, a twinkle in her eye, and her ever pleasant demeanor.
In 2024, Emily won the United States’ first National Civics Bee Championship. While many of her peers were talking about what they wanted to do for causes, Emily talked about what she had been doing for years in her advocacy efforts for ectodermal dysplasias and ELSA.
This year, she stepped forward to become one of NFED’s Advocacy State Leads for Alaska. She encourages other youth to advocate for ELSA and speak up for causes they believe in. Emily has helped make Alaska the first state to have all members of the Congressional delegation co-sponsor ELSA as well as the only state to have local and state-level resolutions supporting the federal bill.
Rising Star Award – Keegan
Some people have a special gift. They walk into a room, and before long, everyone is smiling. That’s Keegan. He has an infectious smile and an outgoing personality. He’s always been the kind of person who touches your heart and makes you laugh.
It’s that beautiful spirit of his which has made him a real asset in the Kays’ Kids Camp and Teens Program. We’ve watched him through the years befriend other campers and make them feel welcomed. This was especially true at last year’s Family Conference in Minneapolis. That’s the kind of leader people remember, one that makes others feel seen.
Over the years, Keegan’s shared his story in NFED videos and blogs. Keegan is a recent high school graduate. He lives in Iowa and is affected by XLHED.
Keegan, thank you for being exactly who you are. Your kindness, your laughter and your willingness to lift others up make our community stronger. We can’t wait to see all the amazing things you’ll do in the years ahead.
Rising Star Award – Zane
Zane has been volunteering for the NFED for as long as we can remember! Was it birth?! He’s the third generation of NFED volunteers in his family as his grandparents were one of the 12 founding families.
Through the years, Zane has volunteered for research, participated in Grand Rounds to educate medical students and professionals and spoken on panels at the Family Conference. He’s participated in NFED marketing videos and shared his story to raise awareness.
This year, he was the youngest member of the Family Conference Planning Committee. When asked to join, Zane said “he was excited to be a part of the committee and the NFED – how could he not?!”. In this role, he helped plan activities for Kays’ Kids Camp, gave input and honest feedback on activities for the Teen Program and young adults.
He is affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome and lives in the St. Louis area.
Outstanding Service Award – Jack Kriz
This award recognizes individuals who have significantly contributed to the NFED through their volunteer efforts.
After attending his first Family Conference in 2002, Jack Kriz wrote the NFED a letter talking about the life-changing experience it was for him. Noticing beautiful writing when they read it, the staff responded by asking him to volunteer to share his story in an upcoming fundraising letter. He said yes and has been volunteering ever since! Read why.
The retired architect has made time to connect with families as a Family Liaison since 2006. He’s rode his bicycle thousands of miles in the heat and humidity to raise awareness and money. He has served on the Board of Directors. Three-finger Jack, as he calls himself, has written blogs, been interviewed for videos, chaired the 2018 Family Conference, served on the Family Services Committee, hauled boxes and set up auction displays. Jack has relentlessly advocated for ELSA, and serves on the Advocacy Committee.
DJ Jazzy Jack rocked the tunes at the annual Talent Shows and even donned a cheerleading outfit to get the crowd excited at a Family Conference. There isn’t much that Jack hasn’t done! He always says yes when we ask, and we ask a lot!
But what makes Jack truly special isn’t just what he does. It’s who he is. He leads with kindness, generosity, and a genuine love for families affected by ectodermal dysplasias. He brings thoughtful ideas, a creative eye, a warm smile, and an infectious laugh to everything he touches.
Tender Loving Care (TLC) Award – Jonathan Korostoff
The Tender Loving Care Award is given to dentists who provide exceptional service to ectodermal dysplasias families. It’s our honor to name Dr. Jonathan Korostoff as this year’s recipient.
Dr. Jonathan Korostoff was attending a Straumann dental implant convention in 2007 when he heard NFED’s Mary Fete speak about the enormous dental needs that people with ectodermal dysplasias face. Learning that insurance companies often auto-deny benefits, he found Mary after the talk, and said, “I want to help.” Ever since, the professor of periodontics at the University of Pennsylvania has gone out of his way to provide exceptional care to affected individuals and oftentimes, for free.
Dr. Korostoff organized his colleagues to become an NFED Dental Treatment Center where our families could receive care from experienced dentists. When families call the NFED with dental questions, Dr. Korostoff is always willing to help staff with answers and he’s served on our Patient Care Council since 2010.
Dr. Korostoff has a deep compassion for families and a desire to transform their smiles. Because of him, individuals in his care can now speak and chew more easily and smile with confidence! We thank Dr. Korostoff for showing them such tender loving care.
The John E. Gilster Service Through Dentistry Award – J. Timothy Wright, D.D.S., M.S.
Dr. Tim Wright’s impact on our NFED family, dental programs, and the ectodermal dysplasias community is nothing short of extraordinary.
This pediatric dentist and professor at the University of North Carolina at Chapel Hill has dedicated most of his career to helping patients with ectodermal dysplasias. The NFED’s relationship with Dr. Wright began in 1992 when the Foundation funded his first dental research project. That began a friendship that continues to this day.
He’s made enormous contributions to our understanding and treatment of the ectodermal dysplasias, especially within dentistry. Dr. Tim has written dental education articles for the Foundation, published research, and educated other dental professionals at NFED symposia. He educates the next generation of dentists coming out of UNC on how to diagnose and treat ectodermal dysplasias to provide children with the smiles they need and deserve. At Family Conferences, you can find him meeting one-on-one with families and their kiddos to discuss treatment plans and what they can expect for their child.
Dr. Wright’s brilliant mind and practical approach have been key assets on our Scientific Advisory Council (SAC) where he’s served for 20 years and the Board of Directors where he’s served for nine years. Dr. Wright has been a leader in our Ectodermal Dysplasias Classification project and the development of the Ectodermal Dysplasias Registry. He has all of this intelligence, compassion for children, and he’s funny, too!
Kenneth S. Brown Research Award – Dorothy K. Grange, M.D.
The Kenneth S. Brown Research Award recognizes individuals who have significantly contributed to ectodermal dysplasias research.
For 20 years, Dr. Kathy Grange has generously shared her expertise as a geneticist, professor of pediatrics and valued member of the NFED SAC. She has helped guide our research efforts, educated families at Family Conferences and been a trusted source of knowledge and support. We especially honor her extraordinary contributions to XLHED research and her role in helping bring the first prenatal treatment closer to reality.
Dr. Grange has been an integral part of this groundbreaking work since 2006. She has helped the NFED understand the science, provided invaluable guidance and, most importantly, dedicated countless hours as a principal investigator in both human clinical trials studying this promising therapy.
Based at Washington University in St. Louis, Dr. Grange led a site for the Newborn XLHED Clinical Trial sponsored by Edimer Pharmaceuticals, where treatment was given after birth. Today, she continues her leadership as a principal investigator in the Edelife Clinical Trial, where baby boys affected by XLHED receive treatment before birth.
This research is complex, demanding, and years in the making. Alongside her fellow investigators, Dr. Grange has helped advance our understanding through careful study, collaboration and numerous scientific publications. While the Edelife Clinical Trial is still underway, it has given our community something incredibly powerful: hope. Hope that future generations of children with XLHED may have a treatment option that was once unimaginable.
Philanthropy Partnership Award – EspeRare Foundation
The EspeRare Foundation is a nonprofit organization based in Switzerland and was founded in 2013 by three former pharmaceutical executives who wanted to give a better life to children affected by rare diseases. They collaborate with groups like the NFED to develop therapies to serve unmet needs.
In 2016, Dr. Holm Schneider had successfully treated several babies with XLHED with the innovative prenatal therapy called ER004 and found they developed normal sweat glands. The only problem was that no organization was willing to further develop the treatment for market and engage in a clinical trial.
The EspeRare Foundation solved that problem in 2017 when they acquired the research and began development. From the beginning, EspeRare recognized the vital role individuals affected by XLHED had played in the research for years and would be needed to do moving forward.
For nine years, they have worked with the NFED to advance XLHED research and support our families. They have understood and shared our passion to provide XLHED families with a potential treatment.
We thank the EspeRare Foundation for picking up the baton and carrying this work to the finish line and for their significant financial support of the NFED.
Corporate Partner Award – Pierre Fabre
Pierre Fabre is a pharmaceutical and dermo-cosmetics company based in France. Their commitment to the ectodermal dysplasias community began in 2020 when they partnered with The EspeRare Foundation to co-develop ER004 as a treatment for XLHED. The Edelife Clinical Trial began the next year.
To that point, the XLHED research had stalled as the EspeRare Foundation searched for a pharmaceutical company. Pierre Fabre saved the day when they stepped forward to sponsor the trial and give hope to everyone in the XLHED community.
For the past five years, they have been a significant financial partner to the NFED, for which we are tremendously grateful. Together, we have worked towards a future where one day there may be a potential treatment for XLHED, the most common type of ectodermal dysplasia. We salute everyone at Pierre Fabre for seeing the benefits of developing a pioneering treatment for a rare disorder.
Geismar Family Volunteerism Award – Jamie Gettings and The Duke Family
The Geismar Family Volunteerism Award celebrates families who turn their love into action, and one of the families who embodies that spirit is the Duke family.
When Nicholas was born in 2013 with XLHED, Jamie began searching for answers and support. While exploring the NFED website, she discovered families hosting Don’t Sweat It Runs and a new passion ignited in her. She decided she was going to sweat for Nicholas because he could not.
From that simple but powerful idea, the Sweat It Out 5K was born in their South Carolina community. Jamie stepped far outside her comfort zone. She got advice from other race organizers, secured permits, recruited volunteers and learned how to ask for donations.
Family, friends and neighbors rallied around the Duke family with incredible generosity and support. What started as one race grew into a beloved community tradition. Year after year, the Duke family gave their time, energy and hearts to make each event a success.
Last fall, they crossed the finish line of their ninth and final race. Together, they raised more than $46,000 to support the NFED’s mission.
The Duke family has shown us what is possible when determination, love and purpose come together. To Nicholas and the entire Duke family, thank you for every mile traveled, every dollar raised, and every life you’ve helped change.
Congratulations to all of our award winners!
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