Geri Allen
JoAnne Alter
Francis Alter
Holly Amsterdam
Jill Beer
Claudia Philips Borg
Steven Boughner
Karen Callaghan
Betsy Chairman
Farin Chasin
Jennifer Shultz Cohen
Anne Corwin
Seth Ferris
Sara Freiberg
Jennifer Geismar
Cynthia Grayson
Halloween Bash Committee
Carol Hanover
Sandy Hyman
Steffanie Hyman
Flora Kamhi
Laurie Quinn Knapic
Allison Sealove Laskowitz
Elizabeth Beil Lewis
Jill Mesologites
Jennifer Mihajlov
Rob Mihajlov
Lynne Negron
Donna Newton
Alan Olsen
Dee Dee Olsen
Steven Reif
Dr. Jonathan Richter
Barbara Russo
Deborah Russo
Deirdre Russo
Dr. Mark Russo
Penny Shatz
Yvette Glick Shukat
Sabrina Simon
Elyssa Slutzky
Wendi Diamond Sulimani
Lorrie Vaccaro
Rowena Villaruel
Bill Wilkinson
Roma Wilkinson
Dear Friends and Family,
Welcome to the 2024 Halloween Bash! We are honored to host this online event in support of the National Foundation for Ectodermal Dysplasias (NFED), an organization whose mission is deeply meaningful to us.
Our goal for the Halloween Bash remains steadfast: to raise funds that will enable the NFED to expand its support programs, identify improved treatments, and promote research that will one day lead to cures. The NFED continues to be a global leader in the ectodermal dysplasias community, with an increasing demand for its services as genetic testing improves diagnoses.
People often ask, “How many individuals are affected by ectodermal dysplasias?” It’s a challenging question to answer, since they are rare conditions. Advances in technology and genetics have allowed an NFED research team to develop estimates for several of the most common types of ectodermal dysplasias. Fewer than 1 in 100,000 people (0.36) are affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome, which affects Ryan. Meanwhile, the most common type, X-linked hypohidrotic ectodermal dysplasia (XLHED), affects 2.99 per 100,000 people. These numbers are crucial, as they help quantify the burden of the disorder within the healthcare system.
Ryan turns 26 in November, and we are thrilled to share that he is thriving! He lives in Hauppauge, Long Island and works not just one but two jobs. He has a passion for theater, enjoys bike riding, and cherishes spending time with family. Ryan’s resilience is an inspiration, and we are so proud of all he continues to accomplish.
This past July, Ryan joined Alice, Ruth, and 230 others in Washington, D.C., for the NFED’s Advocacy Day on Capitol Hill. Teams of advocates from 37 states met with legislators to bravely share their stories and highlight the challenges they face in obtaining necessary medical and dental care. The focus of these meetings was to gain support for the Ensuring Lasting Smiles Act (ELSA), which, if passed, will provide critical benefits for NFED families. It was a deeply moving experience to witness advocates affected by ectodermal dysplasias and other congenital anomalies come together with the shared goal of driving change. We remain hopeful that our grassroots efforts will bring about the longneeded reform.
The NFED’s work requires significant resources, and that’s where we need your help. We invite you to contribute by making a donation, purchasing a journal ad, or bidding in our online auction. Together, we can reach our $125,000 goal!
We sincerely thank each of you for your support—whether this is your first Halloween Bash or your 24th. Thank you for sharing in our vision to make a difference for ectodermal dysplasias families everywhere.
With gratitude,
Ruth and Keith Geismar
Event
Alice and Bruce Geismar
Hosts Event Chairs
Dear Halloween Bash friends,
For nearly a quarter of a century, each fall we come together with the Geismar family and all of you to celebrate the Halloween Bash. Welcome back and we’re grateful you’re here! It’s an extraordinary event and its impact on the Foundation has been profound. The Halloween Bash has raised $4.4 million for the NFED and enabled us to achieve things we never dreamt possible.
I’m proud to share with you how the National Foundation for Ectodermal Dysplasias (NFED) has been advancing our mission for the last year. Our services now reach individuals affected by ectodermal dysplasias in 121 countries. Just this year, 319 new members joined the NFED. They contact us in search of answers and support. Fortunately, the Foundation has the most information on the conditions in the world. But, families continue to have questions to which we don’t have the answers – yet.
That’s why ectodermal dysplasias research is critical. We learned early on that if the NFED wasn’t leading research development, no one would. The Foundation is the catalyst that brings researchers and clinicians together to ask the right questions and to forge a path forward.
This year, it was paramount that we expand our research efforts, especially when genomic advancements occur every day. We are hosting two international research conferences in the next six months to translate current knowledge into future therapies for ankyloblepharon-ectodermal defects – cleft lip and/or palate (AEC) syndrome and incontinentia pigmenti (IP). We must identify better treatment options for these complex ectodermal dysplasias.
The NFED continues to support the Edelife Clinical Trial for x-linked hypohidrotic ectodermal dysplasia (XLHED). Ten babies have received the pre-natal investigational therapy and an additional 5-10 are needed. The study’s goal is to confirm early findings that show that boys who received the in-utero treatment developed normal, working sweat glands! It’s an extraordinary outcome and research the NFED began in the late 1980s. We stand committed to bringing this treatment to market for future XLHED generations, once the trial is found to be successful. It’s the first treatment of its kind to treat a birth defect before birth!
Our families need treatment options for their varied symptoms. But, those in the United States often have insurance companies that deny benefits and then they go without care. This must stop. The NFED continues to lead national efforts to get the
Ensuring Lasting Smiles (ELSA) passed in the 118th U.S. Congress. Stay tuned as we expect the bill to be re-introduced this fall and we need all NFED supporters to join us and advocate. Let’s get it passed!
These are just some of the ways that we are helping families with ectodermal dysplasias. And these successes are possible because of your generosity. Each day, our small staff mightily works to support affected individuals in the ways they need. And my friends, their needs are great. With all of my heart, I thank you for caring about our extraordinary community!
I am especially grateful to Ruth and Keith Geismar, Alice and Bruce Geismar, and the Halloween Bash Committee for creating another magical, online event this year. Enjoy bidding on the many auction items!
Gratefully,
Mary Fete, MSN, RN, CCM Executive Director National Foundation for Ectodermal Dysplasias
Our Mission
To empower and connect people touched by ectodermal dysplasias through education, support, and research.
Our Vision
The National Foundation for Ectodermal Dysplasias will be a recognized leader among health-related nonprofit organizations and will be known for providing comprehensive services with loving care to individuals affected by ectodermal dysplasias and their families; for helping individuals and families benefit from early diagnosis and care, and for spearheading research that ultimately develops a cure.
We Thank Our 2024 Sponsors
Dear Ruth and Keith,
We continue to be inspired by your unwavering commitment to the NFED. Your efforts on behalf of this important organization make us all proud. Your dedication and hard work are the driving force behind the success of the
With much love, Mom and Dad
We are grateful
for supporting NFED’s mission to help children around the world who are affected by ectodermal dysplasias! to the
LOUIS J. AND JUNE E. KAY FOUNDATION
All of us at the NFED remember Mrs. Kay with great love. Her warmth, kindness, and unwavering dedication to the NFED were a constant source of inspiration. She was passionate about helping children affected by ectodermal dysplasias. We will forever cherish the memories of her laughter, her wisdom, and her enduring spirit. Her and Mr. Kay’s legacy continues to positively impact our families.
We appreciate the continued support of the Louis J. and June E. Kay Foundation for
Kays’ Kids Camp and Teens Program!
Dearest Ryan,
We are so proud of you and the young man you have become. There is no one kinder, more compassionate, more helpful or more loving. You always find a way to put a smile on our faces with your winning personality. You are the best dance partner, bike riding buddy, theater friend, cooking assistant, shopper and carrier of packages. You are always quick to help and pitch in. We love that you are living in your own apartment and working. You are always a joy to be with.
We love you and are so happy to see you thrive.
All our love, Grandma and Grandpa
