2019 Halloween Bash Journal - National Foundation for Ectodermal Dysplasias

On behalf of the Geismar family, welcome to Halloween Bash 2019!

Thank you for your support.

2019 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 Scott Hamroff Carol Hanover Sandy Hyman Steffanie Hyman 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. Johnathan 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 2019 Dear friend, Welcome to the 19th annual Halloween Bash to benefit the National Foundation for Ectodermal Dysplasias (NFED)! We are honored to once again host this virtual event.

We invite you to help us raise $150,000 for the NFED. This year’s event provides you the opportunity to bid on great prizes in the online auction, make a gift or purchase an ad in this journal.

After nearly two decades, we are thrilled that the Bash has provided more than $4 million for the Foundation. It’s truly extraordinary! We thank you for your unwavering commitment to families affected by ectodermal dysplasias.

We are pleased to report that Ryan is thriving. This spring, he attended his Senior Prom and as always he was a sought out dance partner. He marched in his high school graduation and attended his high school’s Senior Frolic. We are so very proud of him and so delighted by his growth and development. He continues to love music, concerts, theater and family celebrations. Ryan is a happy boy who brings joy to all those who know him.

The NFED continues to be the world leader in the ectodermal dysplasias community. Here are some key highlights from the year so far: • •

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The NFED was instrumental in getting the Ensuring Lasting Smiles Act introduced in Congress in February. ELSA will close a loophole in the law that allows insurance companies to deny necessary medical and dental procedures to restore function and replace teeth.

NFED-funded researcher Maranke Koster, PhD is developing a plan for the treatment of skin erosion in AEC and EEC patients by generating healthy replacement skin using the patient’s own stem cells. At this year’s Family Conference, 17 affected individuals volunteered skin biopsies to continue her studies.

The NFED is collaborating with EspeRare Foundation to test a prenatal treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). The phase II clinical trial launches later this year and seeks to confirm the successful findings of a preliminary study. Three babies with XLHED who received a protein in utero developed normal sweat glands, salivary glands and developed a greater number of teeth. The Foundation started and advanced this research since the late 1980s.

The NFED has funded a study to develop a non-invasive way for doctors to diagnose XLHED in utero. Rather than go through an amniocentesis, pregnant mothers could simply have a blood test to determine if their baby was affected by XLHED.

This relatively small foundation continues to make major advancements in research that will improve the lives of families who are affected by these rare conditions for generations to come. Helping other families has always been and continues to be our heartfelt intention in hosting the Halloween Bash.

We are grateful to our wonderful committee who has stood by us for all these years and helped make the Bash the success that it is. We also thank all of the sponsors, donors and bidders. Together, we can provide the resources and support the NFED needs to empower and connect families worldwide.

With love and gratitude,

Ruth and Keith Geismar Event Hosts

Alice and Bruce Geismar Event Chairs

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.

Dear Halloween Bash supporter, The Halloween Bash has become a beloved, fall tradition at the National Foundation for Ectodermal Dysplasias (NFED) for almost two decades. We thank Ruth and Keith Geismar and Alice and Bruce Geismar for their leadership in hosting this 19th event for our ectodermal dysplasias community.

Today, the NFED serves more than 8,600 people around the world. Providing accurate information to families and comprehensive support remain paramount to our mission. For the past few years, we are especially focused on two other key areas: advocacy and research. The number one complaint we hear from families in the United States is that insurance won’t pay for their dental care. For decades, we responded by mentoring them through the appeals process and granting financial assistance to qualified families. And we still do this.

Yet, those efforts were not enough any more. Too many families simply went without care. A $5,000 grant from the NFED is generous but wasn’t enough to help a family afford a bill of $30, 40 or even 100,000 for their complex dental care.

Our solution is to have Congress pass a federal law guaranteeing the payment of health insurance benefits for necessary medical care and treatment due to congenital anomalies. We are proud that the Ensuring Lasting Smiles Act (ELSA) was re-introduced in the 116th Congress in both the U.S. Senate and House of Representatives. This bill means families affected by ectodermal dysplasias and other congenital anomalies could receive the care and procedures they need—and deserve—to gain normal body functions.

As I write this, ELSA has more co—sponsors in the House than any other legislation introduced this year!

We are extremely proud of the work our advocates are doing. The NFED is leading the way and proudly advocating with more than 40 other organizations. We will not stop until ELSA is passed.

While ELSA will help our families be able to afford treatment, our research efforts continue to seek new treatments for their varied symptoms. The most exciting development continues to the upcoming phase II clinical trial for the most common type, x-linked hypohidrotic ectodermal dysplasia. We are working with EspeRare to bring this trial to fruition. The aim is to confirm findings from an earlier study that administering a one-time treatment in utero will enable babies with XLHED to develop normal sweat glands and salivary glands, an increased number of teeth and have zero respiratory issues. It’s amazing to think that this research which we started in the late 1980s, nurtured and advanced is developing a lifechanging treatment!

Our research program continues to fund Maranke Koster’s work to develop a treatment for devastating skin erosions in ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome and ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome using a patient’s own stem cells. She’s also researching how to prevent vision loss in EEC by using stem cells. This year, we partnered with Dr. Richard Lewis at Baylor College of Medicine to help families who do not know what type of ectodermal dysplasia they have to hopefully receive a diagnosis. In 2020, we plan to gather some of the world’s best researchers as a think tank to help us plan where to focus our research efforts for the next 3-5 years.

Generous donors like you are supporting 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. The Halloween Bash has been integral to our funding for almost two decades. It provides us with the resources to implement life-changing programs. For that, I thank you with all of my heart.

Gratefully,

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

A Special Thanks to Our Online Auction Donors Kimara Anhert Americana Linda Cohen Cafe Continential Amy Defillippo D.Exterior Amy Defilippi Dr. Phil Show: Mr. Michael Stern Equinox Kyma Limani Lola Roundabout Theatre Company National Hockey League Foundation: Mr. John Sanful Penny Shatz Virginia P. Sybert, M.D. Toku Uncle Bacala’s Italian Seafood and More - Mr. Peter Hewitson The Writing Room The Tenement Museum Bill & Roma Wilkinson

Visit https://www.32auctions.com/ HalloweenBashAuction2019 to bid on great prizes!

We Thank Our 2019 Sponsors

Laura Wood

THANK YOU to the

LOUIS J. AND JUNE E. KAY FOUNDATION for making wonderful memories possible for the amazing kids who participated in the 2019 KAYS’ KIDS CAMP AND TEENS PROGRAM

at our annual NFED Family Conference.

Our kiddos shared lots of smiles and experiences filled with laughter and love.

Thank You

June E. Kay for your continuing support of the NFED and the individuals & families we serve.

Your generosity has helped countless children affected by ectodermal dysplasias.

In Loving Memory of

Pierce

That endless amount of energy and those infectious blue eyes will be in our hearts forever.

Pierce, your memory will live on in all of us and you will never be forgotten. #Awesome.

In Gratitude to

JoAnne Alter

Each year for the last 19 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

Thank you for your continued support for our Halloween Bash for the NFED. Love,

The Geismars

Dear Ryan, We love you with all our hearts and are so proud of the beautiful young man you are. You are a joy to us and to all who know you. Keep on smiling and enjoying life.

All our love always,

Grandma Alice and Grandpa Bruce

Dear Keith and Ruth, We are so proud of your dedication to the NFED. Your commitment and hard work in support of this cause continues to make real change possible. Thank you for leading the way in this effort.

Love,

Mom and Dad

Dr. Jonathan Richter North Shore Cosmetic and Implant Dentistry

Dearest Ryan, We are so proud of all you have accomplished. You are a wonderful young man with the whole world ahead of you.

Every day is an adventure.

Keep it up.

Love,

The entire Beer family

Congratulations to all the Geismars for all their good work!

Nancy and Elliot Merberg

Reidenouer Insurance Services, LLC. is proud to support the National Foundation for Ectodermal Dysplasias in honor of our nephew, Nikko Vecchini.

Please visit: https://www.ris.agency/

Happy Halloween!

We applaud the mission of the NFED Warm Wishes & Blessings

DeMatteis Family

Congratulations!

Love,

Deborah, Mark Nicholas, Samantha and Ella

Robert, Robin, Zach and Oliver Elson salute Bruce and Alice and the entire Geismar clan.

We love you guys!

To the amazing Geismar Family.

With love,

The Slone Family

Continued success to the whole Geismar Family

The Valenti Family

Kathi and Jeff Glass are very proud to support

Ruth and Keith Geismar and

Alice and Bruce Geismar in their wonderful work for the National Foundation for Ectodermal Dysplasias

The Plandome Heights Women’s Club would like to thank

Ruth Geismar for her many years of hard work and dedication to our club.

We hope the 2019 Halloween Bash is the most successful one yet!

Good Luck!

Dear Ryan, Congratulations on your high school graduation and all of your accomplishments through the years.

We love you, The Mesos and Mooney Family

Friends of the N F ED Edward & Nancy Chairman Jerome & Starr Cline Lyn Corder & Al Somit Thomas Di Napoli Ken & Mimi Heyman

So happy to support the NFED. Ryan and the whole clan always inspire us.

With love,

Sally and Jeffrey

FIGHTING FOR TEETH Advocates from 21 states joined us on Capitol Hill to ask Congress to support the Ensuring Lasting Smiles Act.

We Applaud the Dedication and Commitment of

The N F ED Staff Mary Fete Executive Director

Becky Abbott Manager, Treatment and Research

Kelley Atchison Director, Family and Community Programs

Jodi Edgar Reinhardt Director, Marketing and Communications

Kayla Hollenkamp Administrative Assistant

Lea Richardson Manager, Community Engagement

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 evuluations for our clients

$100 A cooling vest to help a child play sports

We welcomed 440 people to this year’s Family Conference for three days of education, support and research!