NFED 2022 Halloween Bash Journal

Dear Friends and Family,

Welcome to the 22nd Halloween Bash. It’s our honor to once again chair this fundraiser to benefit the National Foundation for Ectodermal Dysplasias (NFED).

We join the NFED in celebrating 40 years of supporting families affected by ectodermal dysplasias. What an incredible milestone for an organization dedicated to a group of 100+ rare disorders. We are proud that the NFED continues to be the world leader of the global ectodermal dysplasias community.

Resources from the Halloween Bash help the Foundation spark innovative research and provide seed grants. Last year, the NFED sponsored an International Research Conference. At this conference a long range plan was created. Four areas of focus were identified: a biobank/registry, diagnostics, prevalence and wound healing/pathways. Research teams have spent the past year collaborating to further develop these target areas.

The most exciting research news is the launch of a clinical trial for the first treatment of its kind for x-linked hypohidrotic ectodermal dysplasia (XLHED). Affected baby boys receive a synthetic protein prenatally that replaces the one missing in XLHED. The six babies who have received the protein thus far have all reported normal sweating and improvements in other symptoms. The NFED started this research in the 1980s. Amazing that these babies can now sweat!

Maranke Koster, Ph.D. continues to develop a strategy for the treatment of skin erosion in patients affected by AEC (ankyloblepharon-ectodermal defects-cleft lip and/or palate) syndrome, the type that affects Ryan. Her team is investigating a method to use an individual’s own skin cells. Scientists would correct the mutation at the cellular level and create new, healthy skin cells for transplantation. They are making significant progress.

In spite of the pandemic, Ryan has accomplished a great deal this year. He proudly graduated from College of Mount Saint Vincent. He is presently living independently in his own apartment, participating in a GIANT STEPS program and has a job working at a local party store. As he turns 24, we are delighted that he is being fitted for his first set of dental implants, freeing him from wearing cumbersome dentures. He continues to love family gatherings, theater, bike- riding, swimming, music and even Harry Styles.

Thank you for helping the NFED provide support, treatment, comprehensive information and innovative research.

With much gratitude,

Ruth and Keith Geismar

Alice and Bruce Geismar Event Hosts Event Chairs

Dear Halloween Bash supporter,

Welcome to the 22nd Halloween Bash to benefit the National Foundation for Ectodermal Dysplasias (NFED)! It’s extraordinary to think about the journey we have been on together to help families who are affected by ectodermal dysplasias.

For 40 years, the NFED has been the recognized leader and trusted source for the ectodermal dysplasias community around the world. We have been celebrating this major milestone all year long with our theme of Deep Roots, Strong Branches.

The Foundation began on December 24, 1981 when 12 brave and determined families envisioned a better future, one filled with better information, resources and connections. Twenty years later, the Geismar family began the Halloween Bash. This event has raised resources that allowed us to expand our mission and scope in ways we never thought possible. To date, the Bash has raised more than $4 million for the NFED. It’s incredible and we are humbled by your generosity.

Since last year’s Halloween Bash, the NFED has made significant progress that I am excited to share with you:

• A clinical trial to evaluate the first in-utero treatment for the most common type of ectodermal dysplasias launched in Germany last November. In preliminary studies, babies affected by x-linked hypohidrotic ectodermal dysplasia who received the prenatal treatment developed normal sweat glands and had other improved symptoms! Families in the United States can now participate in the trial at a clinical site which opened at Washington University in St. Louis. We are proud to have begun and fostered this research for the last four decades. If successful, the treatment would be the first of its kind and be available on the market as early as 2026. Amazing!

• The U.S. House of Representatives voted on and passed the Ensuring Lasting Smiles Act in April. This federal bill we initiated will mandate private health insurance companies to pay for the medical and dental care of ectodermal dysplasias and all congenital anomalies. We are relentlessly leading the charge to get this critical law passed before the end of this Congressional term. It will not be easy, but we are determined.

• After a three-year hiatus due to the pandemic, our Family Conference returned in July! We welcomed with open arms more than 250 people from all over the country to this three-day event. Families were jubilant to be together again. Connecting families has always been at the very heart of our mission. Its importance has never been more clear than after the last few years of not being able to do so. It’s simply magical when our community comes together.

Our small-but-mighty organization has had great success by staying true to our founding mission to empower and connect people touched by ectodermal dysplasias through education, support and research. Thank you for believing in this mission and supporting the Geismars and all families affected by ectodermal dysplasias.

I thank with all of my heart Ruth and Keith Geismar and Alice and Bruce Geismar for their passionate, ongoing leadership. Each year, they strive to raise the awareness and funds needed to help the NFED connect families, find new treatments and initiate research. They have a made a lasting impact.

I wish you and your family all the best. Enjoy this year’s Halloween Bash!

Gratefully, Mary Fete

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.

Dee Dee

Asha Parcells Penny Shatz Shari Ozer

Mona

We Thank Our 2022 Sponsors

Laura Wood

Congratulations to Ruth and Keith Geismar for their on-going support of the NFED. Their leadership hosting the 22nd Annual Halloween Bash is extraordinary. We applaud their devotion to making life better for those affected by these disorders.

With love and pride, Mom and Dad

THANK YOU

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

Dear Ryan,

We could not be any prouder of all you have achieved this year. You graduated from College of Mount Saint Vincent. You started living in your own apartment and enrolled in Giant Steps. You are working at Party Glitter. You are in the process of getting dental implants to replace your dentures. You have taken charge of your own medications. With all this, you continue to be happy, fun, compassionate and helpful and my best bike-riding partner. We can’t wait to see what this year will bring for you. Keep on growing and taking good care of yourself.

Love, always, Grandma Alice and Grandpa Bruce

Each

In Gratitude to JoAnne Alter

In Gratitude to Laura Wood of

for

and

Ryan, We are, as always, amazed by you and all you do! We love you.

In Loving Memory of Bill Russo

We are saddened to lose our dear friend. Since the very beginning of the Halloween Bash, he was a passionate supporter of our family and the NFED. We will miss his smile and kind spirit.

Ryan,

There are no words to express how proud we are of what you have accomplished.  You are kind, caring and most of all, a wonderful young man. We love you very much,

Jill and

Bob

All wonderful things to the Geismar family.

Love, The Slones

Thank you, Geismar family, for 22 years of dedication to the National Foundation for Ectodermal Dysplasias. We are incredibly grateful to your family and friends for your continuous support. Congratulations to Ryan who is in college! We are proud of you!

With love and gratitude, Mary and Tim Fete

Sending love & admiration for your dedication. We are very proud to support Ruth and Keith and the Geismar Family in their wonderful work for the NFED. You continue to make life so much better for so many people.

Jeff and Kathi Glass

Ryan Geismar & Family,

We are so proud of you every day. Keep up the amazing work.

Lots of Love and Support, Cindy, David, Tyler and Gabrielle Wittels

Friends of the NFED

Ed and Nancy Chairman Bill DeSisto

Honorable Tom Di Napoli Anne Dorogroff

Kurt and Nina Kiess Christine Newton

Ozark Prosthodontics Howard and Jill Radley Freemont and Marilyn Reif Lea and Tom Richardson Barbara Russo & Family Stanley and Gloria Zwirn

We convened 80 experts from around the world last October to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. The International Ectodermal Dysplasias Research Conference was truly a landmark event in our 40-year history.

The conference goal was to identify research opportunities and overcome existing barriers. We sought to advance early diagnostics and develop new therapies for symptoms that cause significant challenges for individuals affected by ectodermal dysplasias and other rare diseases.

Since that event, teams have been collaborating and working in the following four areas to advance ectodermal dysplasias research: a biobank/registry, diagnostics, prevalence and wound healing/pathways.

We celebrated when the U.S. House of Representatives passed the Ensuring Lasting Smiles Act (S.754/H.R.1916) in April! Now, our passionate advocates are working to get it to pass in the U.S. Senate and then to the President by January 3.

The NFED is leading the ELSA Network which is comprised of more than 70 organizations. We have hosted 3 Virtual Advocacy Days on Capitol Hill this year to ask Congress to support ELSA. Our families bravely shared their stories.

When passed, this federal bill will provide health care benefits for the medical and dental treatment of not just ectodermal dysplasias, but all congenital anomalies.

Contact your senators today and ask them to support ELSA!

We

It was pure joy in July when the NFED gathered for our Family Conference for the first time since 2019! Connecting families is what we do best. Together, we are better.

The NFED is Celebrating 40 Years!

The NFED turned 40 on December 24, 2021. At our Family Conference in July, we celebrated this incredible milestone with a Gala. It was a magical night filled with awards, Ally Kelso singing “We Can’t Smile Without You”, dancing, fundraising and lots of laughs! We are proud of what we have accomplished and look forward to the next 40 years. Look back at 40 years of pictures and accomplishments by clicking here.