2021 Halloween Bash Journal - National Foundation for Ectodermal Dysplasias

On behalf of the Geismar family, welcome to Halloween Bash 2021!

Thank you for your support.

2021 Halloween Bash Committee Geri Allen JoAnne Alter Francis Alter Holly Amsterdam Jill Beer Claudia Philips Borg Steven Boughner Susan Boughner Karen Callaghan Betsy Chairman Farin Chasin Jennifer Shultz Cohen Anne Corwin Paul Corwin Seth Ferris Sara Freiberg

Jennifer Geismar Cynthia Grayson Carol Hanover Sandy Hyman Steffanie Hyman Flora Kamhi Laurie Quinn Knapic Allison Sealove Laskowitz Elizabeth Beil Lewis Elliot Merberg 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

October 2021 Dear Friends and Family, Congratulations and a hearty welcome to all, to the 21st year of the Halloween Bash for the National Foundation for Ectodermal Dysplasias (NFED). It seems like both yesterday and forever ago, that we were hosting our first event at the Puck Building in NYC. And yet, here we are 21 years later, still working hard after having raised well over $4,000,000.

Over the last 21 years, support from the Halloween Bash has powerfully impacted the NFED’s research programs in many ways: • Classification of more than 100 specific types of the ectodermal dysplasias and development of an international registry.

• Skin care guidelines for infants affected by AEC syndrome (the form of ectodermal dysplasia Ryan has).

• Early research into developing a therapy for the skin erosions associated with AEC and EEC syndromes.

• Development of a synthetic protein called ER-004 which is administered in-utero. The therapy restores the development and function of sweat glands and increases the number of tooth buds in boys affected by XLHED. The phase 2 clinical trial for this therapy will launch in Germany in November and in the United States and additional countries in early 2022.

Additionally, the NFED has been working to gain support for the Ensuring Lasting Smiles Act (ELSA).

This federal legislation would ensure both private insurance group and individual coverage for medically necessary services including dental treatments due to congenital anomalies. At last count, ELSA had reached super majority status in the House of Representatives and is supported by 32 senators led by Senator Tammy Baldwin and Senator Joni Ernst.

Ryan continues to amaze and delight us with his growth and progress as he nears his 23rd birthday.

He started college this fall in person, after a virtual year, at College of Mount Saint Vincent in Riverdale, NY. We all have to take a deep breath of gratitude that the little boy who inspired this event has become a man with a joyful spirit and loving heart. He continues to thrive and move forward.

We are so proud of the commitment of our friends and family to this now virtual event. Our Event Committee, the NFED staff, our silent auction donors, our sponsors and all who donate to this important cause should be proud knowing how much they have helped affected families. The world is a very different place than it was 21 years ago, but thanks to all of you, it’s a friendlier and better place for those affected by ectodermal dysplasias. We are most grateful and overwhelmed by your on-going support.

With much love and gratitude,

Ruth and Keith Geismar Alice and Bruce Geismar Event Hosts

Event Chairs

Dear Halloween Bash supporter, In 1998, the National Foundation for Ectodermal Dysplasias (NFED) first welcomed tiny Ryan Geismar into our world! Surrounding this beautiful young man was a loving family—Keith, Ruth, and older brother Jack. Eventually, one more brother, David would round out this incredible family.

Ryan was diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. This condition can impact the development of several ectodermal structures that may include teeth, skin, sweat glands, hair, nails, eyes, ears, and others. They had never heard of this before, nor any form of ectodermal dysplasia.

The family’s pain was overwhelming, but their love was wondrous. The entire Geismar family came together every step of the way—for Ryan, for the boys, and for each other. Keith and Ruth reached out, talked to others with similar syndromes, met with the NFED, learned as much as they possibly could, and found specialized doctors who could help their son.

Your support will help children like my friend, Ethan. He is affected by EEC syndrome.

Ryan’s progress was miraculous.

Something truly beautiful happened.

Ruth and Keith understood the incredible difficulty of this emotional and physical journey. But they also knew others were going through similar challenges. They decided to step forward to make a real difference in the lives of other individuals and families dealing with ectodermal dysplasias.

In 2001, the entire Geismar family introduced the first NFED Halloween Bash to New York City. And to use a much-overused cliché, the rest is now history. More than 20 years later, the Geismar’s Halloween Bash has raised nearly $4.5 million to help NFED. Ever wonder why we do what we do?

The answer is simple. Just take a look at the beautiful family on the cover of this Journal!

The NFED cares… a lot. One of the things we all love about working with the NFED is our families.

That means being there for every call, every question, and every chance to inspire breakthrough ectodermal dysplasia research and treatments—for Ryan, our families, and all of their children—now and into the future.

Our future is unfolding.

The NFED is supported entirely by grants and donations. That’s how we educate our families, help some afford treatment (especially dental), and aggressively support research into new treatments for a variety of symptoms: •

In the past year, we helped send two expectant moms to Germany where they worked with Dr.

Holm Schneider to further study an in utero treatment that was able to help correct their newborns’ sweating disability.

•

This month, the NFED hosted one of its largest International Ectodermal Dysplasias Research Conferences focused on important, novel treatment approaches.

•

Due to the overwhelming need and support for ectodermal research, we expect to endorse three new studies as a direct result of our October conference.

You are the voice of change!

Generous donors like you are why we are able to provide this important work. Led by the Geismars and the Halloween Bash committee, we have helped thousands of families who face extraordinary challenges due to ectodermal dysplasias.

With your help, we are celebrating new victories, breakthrough research, and a path toward a cure. But change doesn’t happen by accident. Your support, your voice, and your gift empowers us to become the change that a child somewhere is dreaming about right now.

From our board, council, and staff members—and especially on behalf of every family with a loved one with any form of ectodermal dysplasia—please know how grateful we are for your constant love and support!

Gratefully,

Mary Fete Mary Fete, MSN, RN, CCM Executive Director

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.

A Special Thanks to Our Online Auction Donors Americana Linda Cohen Bruce & Alice Geismar Keith and Ruth Geismar Ash Kat Andrew Katz/The Helping Hand Kyma Limani Nordstrom’s Dee Dee and Alan Olsen Shari Ozer Robbie Wagner Tournament Training Center Sephora Penny Shatz Toku Bill & Roma Wilkinson

Visit https://www.32auctions.com/HalloweenBash2021 to bid on great prizes!

We Thank Our 2021 Sponsors

Laura Wood

It’s with enormous pleasure and love that we honor Keith and Ruth for their tireless efforts for the NFED. We are so impressed with their dedication to helping others to have a better future.

21 years is a long time.

We applaud their hard work.

Love, Mom and Dad

THANK YOU to the

LOUIS J. AND JUNE E. KAY FOUNDATION for supporting NFED’s mission to help children around the world who are affected by ectodermal dysplasias!

Thank You June E. Kay for supporting the NFED and the families we serve around the world.

Your generosity has helped countless children affected by ectodermal dysplasias!

Dear Ryan, You are a very, special young man. You continue to dazzle us with your achievements and your acceptance of tough challenges.

You bring joy and love to all. Here’s hoping life brings you great happiness, always.

Love and hugs, Grandma and Grandpa

In Gratitude to

JoAnne Alter

Each year for the last 21 years, you have generously donated your time, effort and considerable talent to the Halloween Bash.

We are very grateful for your on-going friendship, support and love.

All of our love,

Ruth, Keith, Alice, Bruce and of course, Ryan

In Gratitude to

Laura Wood of

Our deepest gratitude for your continued friendship and support.

Love,

The Geismars

Ryan, We are amazed at all of your accomplishments through the years.

Now you are in college!

You are truly an inspiration!

We love you,

Aunt Jill and Uncle Bob

Thank you for 21 years of friendship!

Dr. Jonathan Richter North Shore Cosmetic and Implant Dentistry

Congratulations on 21 years!

Ryan continues to make us so proud.

Love to our whole family.

Sally and Jeffrey Rachel, Paul and Elijah

To the amazing Geismar Family.

With love,

The Slone Family

Thank you, Geismar family, for 21 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

Congratulations!

Love,

Deborah, Mark Nicholas, Samantha and Ella

To honor our wonderful old friends Bill & Babs Russo Steve & Susan Boughner Rob & Suzanne Harwood Fran & JoAnne Alter And all those crazy members of the Geismar clan.

Love and Hugs to all of you and all of yours.

Uncle Bob & Aunt Robin

Friends of the N F ED Edward and Nancy Chairman Andre and Thomas Clejan Michele Klatch / D. Walker Corporation Honorable Tom Di Napoli Anne Dorogoff Kathryn and Dave Millington Charlotte Podolsky Richard and Madeline Schuster

Starla and Richard Mortensen Staric Investments, LLC

414 advocates from 48 states joined us virtually on Capitol Hill this spring to ask Congress to support the Ensuring Lasting Smiles Act. When passed, this federal bill will provide health care benefits for the medical and dental treatment of congenital anomalies.

We Applaud the Dedication and Commitment of

The N F ED Staff Mary Fete Executive Director

Becky Abbott Director, Research and Treatment Advocacy

Kelley Atchison Director, Family and Community Programs

Jodi Edgar Reinhardt Communications Specialist

Kayla Hollenkamp Administrative Assistant

Tim Mickelson Director, Development

Veronica Minard Director, Marketing and Communications

Lea Richardson Manager, Community Engagement

A Big Thank You to Mary Fete, Becky Abbott, Professor Maranke Koster and Dr. Timothy Wright for putting together an incredible International Ectodermal Dysplasias Research Conference.

This conference will help advance early diagnostics, treatments and cures that will significantly help people with developmental ectodermal defects.

Your commitment to our families is unwavering and we thank you for your dedication.

CREATE A SMILE by making a gift to help us provide $5,000 Hearing aids to someone with hearing loss due to ectodermal dysplasia

$2,500 Dentures for a child with few teeth

$1,000 Medical supplies and nutritional support for a child with skin erosion

$500 An air conditioner to cool a child’s bedroom or play area

$250 Medical or dental evaluations for our clients

$100 A cooling vest to help a child play sports