2018 Halloween Bash Journal

18th Annual Halloween Bash October 18 - 31 to benefit the NFED

On behalf of the Geismar family, welcome to Halloween Bash 2018!

Thank you for your support.

2018 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 Mark Erlich Suzanne Erlich 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 2018 Dear Friends, We are honored to be welcoming you to the 18th annual Halloween Bash, a benefit for the National Foundation for Ectodermal Dysplasias (NFED).

In 2000, we knew that we wanted to host an event to contribute to the NFED. We wanted to thank them for the essential support given to us in Ryan’s early months. We decided to host the first Halloween Bash in New York City. It was a success beyond our wildest dreams. We were amazed at the outpouring of love and support.

Today, 18 years later, the Halloween Bash is the largest fundraiser in the history of the NFED. This year with your help we hope to raise $150,000. We are so proud of this event that has raised over $4 million to support life-enhancing research and treatment for families with need.

Ryan continues to grow and develop. How appropriate is it that his 20th birthday falls on Thanksgiving day this year. We can’t wait to celebrate with him. We are very proud of his work at the Nicholas Center and the real-world educational experiences he has there.

Ryan maintains his love of music, concerts, dance and time spent with family and friends. No one enjoys a holiday celebration or party more than Ryan. He is always the most well-dressed person in the room. His sense of style surprises us all. We are delighted that he has enjoyed traveling with his family to London, Syracuse and Florida. We look forward to a great 20th year with gratitude for all the progress he has made and the joy he gives to all.

The NFED continues to amaze us with its dedication to funding important research to help identify more and more genetic markers for the varied ectodermal dysplasias. We are very excited about research into stem cell treatments for “eroded” skin and wound healing, as well. This July the NFED held its second Adovcacy Day on Capitol Hill where adults and children met with Congressman and Senators’ representatives on Capitol Hill to have legislation introduced for insurance coverage for dental needs for those with a genetic disorder like ectodermal dysplasias. We are happy to announce that because of all of the hard work from NFED families and staff, the Ensuring Lasting Smiles Act (ELSA) has been introduced to Congress. The next step is to turn this into a law hopefully in the near future.

Our Halloween Bash has also funded both dentures and dental implants for needy individuals through the NFED treatment fund. Numerous scholarships to Family Conferences and donations of essential medical supplies have been funded through the Halloween Bash. We know we have improved the lives of so many who are affected by these disorders.

We are so grateful to the NFED and the medical community for all the advances we have seen over the last 18 years, but we are also especially grateful to our committee members. They have stuck with us and continue to be here for us with their hard work, dedication and love. Ectodermal dysplasias research continues to develop increased understanding and improved treatments, thanks to the financial support of the Halloween Bash.

Thank you to all our sponsors, supporters, silent auction donors, friends and family for your continued generosity. Thank you for making lives better for all NFED families.

With love and gratitude,

Ruth and Keith Geismar Event Hosts

Alice and Bruce Geismar Event Chairs

Mission To empower and connect people touched by ectodermal dysplasias through education, support, and research.

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 supporters, It is a beautiful time of year to host our 18th Annual Halloween Bash. Families begin planning Halloween costumes, the days are cooler and the season of giving is upon us. I cannot think of a better way to kick off the season than with our largest fundraising event graciously hosted by Ruth & Keith Geismar and Alice & Bruce Geismar.

The Halloween Bash continues to provide almost a quarter of the NFED’s financial resources each year to expand our support, research and treatment programs. We thank you and all of our donors who believe in our work. Ruth and Keith Geismar and Alice and Bruce Geismar have passionately lead the way to raise more funds than anyone else in our history. With your help, they have now raised over $4 million for the NFED! These funds support our programming and fuel our numerous research efforts. We are dedicating ourselves to investing significant resources in the Research Program for the next three years. We firmly believe that now is time to boost our program.

Several exciting break through projects are on the horizon for X-Linked Hypohidrotic Ectodermal Dysplasias (XLHED), Ankyloblepharon-Ectodermal Defects-Cleft Lip And/Or Palate (AEC) Syndrome and Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome.

We are also addressing a common challenge for a families affected by ectodermal dysplasia. In the United States, a family can expect to spend $150,000 on their dental care in their lifetime. The biggest complaint we hear from our families is their insurance company won’t pay. We want this to change. We are excited to announce that Ensuring Lasting Smiles Act (ELSA) has been introduced as a Bill in the Senate and House of Representatives. When passed, ELSA will end decades of struggle families affected by the conditions have endured battling their insurance companies.

Our success is due to the commitment from our Advocacy Committee, the hundreds of people who attended our two Advocacy Days on Capitol Hill, those who made phone calls, sent emails, made visits and sent letters to their representative. And, of course from the dedicated hours from staff to make this dream a reality.

It is a wonderful time at the NFED. We thank you, the Geismar family, our Board of Directors, Councils and all of our loving NFED families who have contributed to our successes. Let the Halloween Bash celebration begin!

With warmest gratitude,

Mary Fete

Executive Director

A Special Thanks to Our Online Auction Donors LUSARDI’S Dr. Phil Show Equinox Fitness Club MCC Theater Toku Uncle Bacala’s Sur La Table Limani Keith & Ruth Geismar Joseph Scully/Grandstand Restaurant LOLA Bill & Roma Wilkinson The Writing Room The Public Theater Roundabout Theatre Company Penny Shatz AshKat Andrew Katz Marc Routh & The STOMP Company BLT Prime

Visit https://www.32auctions.com/HalloweenBash18 to bid on a prize!

2018 Sponsors

In loving memory of

Henry Erlich

A true supporter who loved the NFED and certainly enjoyed every conference he attended.

In our hearts forever.

Thank you to the Louis J. and June E. Kay Foundation for making fond memories possible for the wonderful kids who participated in the 2018 Kays’ Kids Camp and Teen Program at our annual NFED Conference.

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

THANK YOU!

Thank You

June E. Kay

for your continuing support of the NFED, the individuals & families we serve. Your generosity has helped countless children affected by ectodermal dysplasias.

Building A Future To Smile About

ColgatePalmolive.com

Best wishes to all the Geismars’.

From all the Merbergs’ for a job well done.

The Merberg Family

North Shore Cosmetic & Implant Dentistry

Debbie, Jonathan, Zachary, Gabriella and Adam

In Gratitude to

JoAnne Alter

Your dedication and commitment means so much to our family and to our larger NFED family. We couldn’t do it without you. Thank you for your continued support.

Much love,

The Geismar Family and especially Ryan

In Gratitude to

Laura Wood

Your support makes a huge difference to the NFED and for the Halloween Bash.

Thank you.

The Geismars

Keith and Ruth, We are so proud of your on-going effort to support the NFED. Keep up this important work. Congratulations on Halloween Bash 2018.

Love always,

Mom and Dad

We are honored to continue to support Keith and Ruth and family and the NFED.

Love,

Jennifer, Peter, Nathaniel & William

Dear Ryan, We are so proud of you and all of your achievements.

We are so impressed with the grace you show at all times. You never complain as you face the many challenges that life throws at you. Grandpa and I applaud your bravery, strength and caring heart. We love you always.

With much love,

Grandma Alice and Grandpa Bruce

Dearest Ryan, What a wonderful, caring, special young man you have become. We love how much you enjoy music and going to the theatre. You certainly enjoy the arts. As you enter the next decade of life, we wish you only the best health and happiness.

All our love,

The Beer family

To the Geismars A truly wonderful family.

Love,

The Slones For the entire Geismar clan For all these many years.

With love,

Bob, Robin, Zach & Oliver

Ryan continues to lift us up. His beautiful spirit has inspired us to rise above the challenges of a very difficult year.

We send love to all.Â

Sally Freedman and Jeffrey Geismar

Congratulations on another successful year!

Deborah, Mark, Nick, Samantha and Ella

Wishing the NFED continued success!

Warm wishes from, Happy Halloween Bash 2018!!!

Jill and Andrew Mesos Will, Ilyssa and Sam Mooney

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.

Kathy & Jeff Glass

The DeMatteis Family

Thank you, Geismar Family, Committee, Sponsors and Halloween Bash Supporters!

The NFED Staff

Friends of the NFED Mr. and Mrs. Richard Schuster Tom DiNapoli Jonathan, Tiffany and Cole Nix Lyn Coroder and Al Somit Jack and Mara Salomon The Korn Family Mimi & Ken Heyman

Happy Halloween from All of the NFED Kids to You!

2018 NFED Family Conference Portland, OR July 6-7, 2018

Boost the Cure

The NFED held its fist ever blitz campaign during Conference to raise money for ectodermal dysplasias research. Over $68,000 was raised in 72 hours!

Thank you to all of our supporters!

Ectodermal Dysplasias Advocacy Day on Capitol Hill - July 18, 2018

We Applaud the Dedication and Commitment of

The NFED Staff Mary Fete Executive Director Kelley Atchison Director, Family and Community Programs Brittany Campbell Director, Development Jodi Edgar Reinhardt Director, Marketing and Communications Kayla Hollenkamp Administrative Assistant Lea Richardson Manager, Community Engagement