NFED Halloween Bash Journal

National Foundation for Ectodermal Dysplasias

October 17th - 31st

On behalf of the Geismar family, welcome to Halloween Bash 2017!

Thank you for your support.

2017 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 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. 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 2017 Dear Friends, We are honored to be welcoming you to the 17th 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, 17 years later, the Halloween Bash is the largest fundraiser in the history of the NFED. This year with your help we hope to exceed the $4 million mark for funds raised. We are so proud of this event that has supported life-enhancing research and treatment for families with need.

Ryan continues to thrive. He looks forward to his 19th birthday this November. It’s hard for us not to get choked up thinking about how far he has come over the last 19 years. Today Ryan is a fan of ballet, especially “The Nutcracker”, Broadway shows, hip-hop music and rap, as well as the NY Philharmonic. He enjoys activities we would never have thought possible, like: sleep away camp, playing baseball and basketball, biking, kayaking, fishing and swimming. He is looking forward to travelling to London with his family this spring to visit his brother, Jack. At the same time, he has maintained his standing as the most fashionable boy at Manhasset High School.

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 as part of the 2017 Family Conference, over 175 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. This Advocacy Day was truly an awesome and worthwhile experience that we hope will move this issue into the spotlight.

As well as research, our Halloween Bash has 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 17 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 17th 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 close to $4 million for the NFED! These funds support our programming and fuel our numerous research efforts. We have decided this year to invest 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 held our first Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19th. This was an extraordinary moment in the history of the NFED. We took 175 adults and children with us and stormed Capitol Hill on a mission to educate our Congress about ectodermal dysplasias. Despite scorching temps and long walks, families met with more than 145 offices of the House of Representatives and Senate. We now have a Senate Resolution and House Resolution and hope to have a federal bill drafted, introduced and signed into law to provide health benefits for the dental care of ectodermal dysplasias.

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 Dr. Tina Adamopoulos, Ability and Beyond AshKat Ben’s Deli Tory Burch Casa Nonna Linda Cohen Equinox Fitness Club Alice & Bruce Geismar Keith & Ruth Geismar Andrew Katz Kyma Restaurant LUSARDI’S MCC Theater Molinari Jewelers The Nines Dee Dee & Alan Olsen Om Sweet Om Yoga Parlor Steak & Fish Public Theater Restaurant LOLA Roundabout Theatre Company Joseph Scully/Grandstand Penny Shatz Mylissa Schiff Lynn Stoller Collection LLC T BAR Steak & Lounge Bill & Roma Wilkinson The Writing Room

Visit https://www.32auctions.com/Halloween-Bash to bid on a prize!

2017 Sponsors

In loving memory of

Louis J. Kay

The NFED sincerely appreciates the significant impact that Louis J. Kay has made on the lives of hundreds of children affected by ectodermal dysplasias.

The NFED notes with great sadness the passing of longtime supporter Louis J. Kay. The annual contributions made to the NFED through the Foundation established by Louis and his wife, June E. Kay, provide the funding for Kays’ Kids Camp and Teen Program at the annual NFED Conference.

Hopefully these annual gifts will continue for many years to come so that his memory will be kept alive.

North Shore Cosmetic & Implant Dentistry

Debbie, Jonathan, Zachary, Gabriella and Adam

Working Together For A Better World

ColgatePalmolive.com

Happy Halloween from All of the NFED Kids to You!

In Honor of

JoAnne Alter

Thank you for your continued commitment to the NFED and the Halloween Bash. Your contribution to this cause has made a world of difference for Ryan and all those affected by ectodermal dysplasias.

With love,

The Geismar Family

Thank you to

Laura Wood

We are grateful for your support of the NFED and the Halloween Bash.

The Geismar Family

Keith and Ruth, Your efforts to make the world a better place for those affected by the ectodermal dysplasias inspires us all.

Here’s to both of you and the Halloween Bash 2017.

With love,

Mom and Dad

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

Love,

Jennifer, Peter, Nathaniel & William

To Ryan with our love, Congratulations on Halloween Bash 2017. We are so proud of you. Each year you surprise us with new achievements and growth. As you approach your 19th birthday, we can’t wait to see what new steps you take.

We applaud your beautiful caring heart.

Love,

Grandma Alice and Grandpa Bruce

Dear Ryan, You make us smile and fill our hearts with joy every day.

Thank you to the NFED for all of your hard work on behalf of all of the children with ectodermal dysplasias.Â

Much love always, Â

Nanny Sonia and Poppy Henry

The Beer family would love to express how truly proud we are of you. You have grown so much over the years.

You have become a wonderful young adult with a heart of GOLD. You are the first to always help and the last to sit down! You are an aspiring young adult, reach for the stars!

Love,

Aunt Jill and Uncle Bob Bryan, Stephanie, Sophia and Joshua Andrew and Heather

Ryan, We love your delicious hugs and kisses everytime we see you. You always brighten a room with your sweet contagious personality.

All our love!

Aunt Suzie, Uncle Mark, Brooke and Nicole

We’re proud of the Geismars Ongoing Support of NFED.

From,

Nancy and Elliot Merberg

With best wishes to the Geismar family.

Thanks for the work you do in pursuit of a cure!

From,

Bob & Peggy Gartland

The Geismars Amazing and Inspiring.

From

The Slone Family

A Big Thank You to the Geismars for Their Love and Support!

Tim & Mary Fete

Continued Success From

The Valenti Family

Congratulations Geismars’ on Another Successful Year.

From

Mark, Deborah, Nick, Samantha and Ella

We Love Bruce & Alice, the Kids and the Grandkids!

Robert & Robin

Suzanne & Robert Harwood

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

Best wishes on continued good work for this cause.

The Shatz’s

Ectodermal Dysplasias.

Great work you

Warm Wishes

all are doing!

& Blessings From,

Oliver Clark

The DeMatteis Family

Congratulations on another successful

Honoring the continued dedication of Allison Laskowitz

Halloween Bash!!!!Â

The Rabiner Family

Jill, Andrew, Will, Ilyssa and Sam Mooney/Mesos Family

Happy Halloween to the cutest and most special trick or treaters - the NFED kiddos!

Marissa Salvo

Friends of the NFED Mr. & Mrs. Peter Aliani Karen Blackstrong Penny Domow & Bob Wolf Tom DiNapoli Michele Klatch Kathryn Millington Ward & Meredith Morgenthau Jack and Mara Salomon

Kays’ Kids Camp and Teen Program The NFED assigned investigative reporters at the 2017 Family Conference...

to see if all the kids were making happy memories that they will never forget at Kays’ Kids Camp and Teen Program.

The answers were a resounding, “Yes!” Look at these happy kids!

Thank you!

Ectodermal Dysplasias Advocacy Day on Capitol Hill - July 19, 2017

We Applaud the Dedication and Commitment of

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