2020 Halloween Bash Journal - National Foundation for Ectodermal Dysplasias

On behalf of the Geismar family, welcome to 20 years of the Halloween Bash!

Thank you for your support.

2020 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 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 2020 Dear friend, Welcome to the 20th annual Halloween Bash to benefit the National Foundation for Ectodermal Dysplasias (NFED)! We are honored to once again host this virtual event on behalf of all our friends, families and loved ones with ectodermal dysplasia.

After two decades of celebrating Halloween fun, we are thrilled that the Bash has raised over $4 million for this small foundation that means so much to our family. Your friendship and support through the years has been truly extraordinary! Keith and I, along with Bruce and Alice, and our team of 50+ committee members, would like to thank you for your unwavering commitment to the tens of thousands affected by ectodermal dysplasias across the country – and around the world!

2020 is a landmark year for us – it’s the 20th Anniversary of our Halloween Bash. But it’s also a year that has been difficult for many of us as we’ve struggled to change our daily lives – especially in New York. I don’t know about you, but I’m glad that our Bash finally gives us a fun reason to wear masks!

This year, we invite you to help us raise $100,000 for the NFED. By popular request, this year’s event once again provides you with an opportunity to bid on great prizes in our online auction, to make a gift donation, or to purchase an ad in this journal.

We are pleased to report that Ryan celebrated his 21st birthday earlier this year and continues to thrive!

Like the entire family, he is looking forward to this year’s Bash – and even though we’ll be celebrating virtually, he and the entire family will be dressing up in their favorite Halloween costumes. I hope you will join us – and send pictures of you and your family in your costumes!

The NFED continues to be the world leader in the ectodermal dysplasias community. Here are some key highlights from a year filled with achievements and ongoing breakthrough research projects that you’ve helped support: •

•

• •

The NFED provided access to patients to Dr. Maranke Koster for her research for the p63 syndromes. Nineteen individuals provided skin biopsies for her study, “Towards a cure for skin erosions in AEC patients,” to develop a treatment using stem cells to treat skin erosions. (This is what Ryan has.)

The FDA granted the Breakthrough Therapy Designation based on the findings when Prof. Holm Schneider successfully treated three males affected by XLHED with ER-004 while in-utero. ER-004 is a bio-engineered protein that replaces the nonfunctioning protein missing in the EDA gene that causes XLHED. The NFED added 2 new Dental Treatment Centers: Dental & TMJ Specialists of Greater DC in Bethesda, Maryland, and Eastman Institute for Oral Health in Rochester, New York. Our total number of participating treatment centers is now up to 20.

More than 500 volunteers helped the NFED serve our children and families. In total, volunteers logged in nearly 6,000 hours. Plus, 15 families hosted local events to raise money and awareness for the NFED. This includes our Halloween Bash!

The National Foundation for Ectodermal Dysplasias is a small but mighty organization. They have been at the forefront of genetic research and bioengineering projects and are instrumental in inspiring breakthroughs that are leading to life-changing treatment options – and one day, potential cures.

Thank you to our committee and to all who have joined and supported the Halloween Bash all these years. Together with our sponsors, donors and bidders, we are improving the lives of all those affected by these rare conditions… now and into the future!

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, 21 years ago, we embraced Keith and Ruth Geismar and the entire Geismar family into our NFED community after the birth of their son, Ryan, who was diagnosed with Ankyloblepharon-Ectodermal Dysplasia-Clefting syndrome (AEC). The following year, in 2001, the Geismar family introduced the Halloween Bash to New York City – and the National Foundation for Ectodermal Dysplasias (NFED).

Since then, the Halloween Bash has become one of the most beloved traditions at the NFED. Now, fully two decades after their first in-person Halloween Bash, Ruth and Keith Geismar and Alice and Bruce Geismar have established themselves as leaders – in hosting the 20th anniversary of this year’s virtual event – and in the ectodermal dysplasias community.

Today, the NFED continues to stand with open arms to welcome families who have just been diagnosed, to answer their questions, to point them toward resources, and to help calm their fears. We provide individuals and families affected by ectodermal dysplasia with a place to turn for reliable information, support, a peer network and hope. Our website and publications empower individuals and families with facts and experiencebased knowledge that even their doctors often cannot provide.

Gratitude is so important. This seems especially true during these difficult times, as friends, families and strangers reach out in loving acts of kindness to help others… by dropping groceries off to a neighbor at high risk, by preparing meals for those out of work and out of resources, and by the amazing medical workers who are on the front lines helping care for others. Although we could not physically be with everyone throughout this year, we are still supporting one another any way we can. We continue to be there for you, for our families, for our staff, and especially, for every child living with ectodermal dysplasia. During these challenging days, we are all here, working harder than ever, to listen, to support and to help.

For the past few years, we have especially focused our efforts on two 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. The NFED is working harder than ever to get the Ensuring Lasting Smiles Act passed so that medical insurance will cover the crushing financial burden of expensive dental treatments for those with congenital anomalies.

The Ensuring Lasting Smiles Act (ELSA) is at a critical point right now. We have until the end of the year to pass this bill. And when we do, that means insurance companies must view functioning teeth as necessary – not simply “cosmetic.” Dental treatment necessary for kids with genetic anomalies will finally be viewed as a basic right! In order to do this, we need a super-majority in both houses of Congress. Currently, we have a super-majority in the House. In the Senate, we need 67 total votes for a super-majority; we are just 16 senators away, with 40 senators officially co-sponsoring and another 11 committed and in the process of joining the bill.

While ELSA will help our families afford treatment, particularly dental, our research efforts continue to seek new treatments for a variety of symptoms. We are currently supporting four key needs linked to our exciting research advances: • • • •

Identify female XLHED carriers (this is a major, unmet need), Identify currently unknown/ undiagnosed forms of ectrodermal dysplasias in our client base, Advance exciting new research on AEC Syndrome (yet to be announced), and Prepare International Research Conference, tentatively set for Oct 2021 (focusing on important, novel treatment approaches).

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 TWO decades. It provides us with the resources to implement life-changing programs.

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!

Thank you with all of my heart,

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

20 Years Halloween Bash

A Special Thanks to Our Online Auction Donors Andrew Katz, The Helping Hand Americana Manhasset AshKat, Inc. Linda Cohen Ruth & Keith Geismar Kyma Limani DeeDee & Alan Olsen MCC Theater National Hockey League Foundation Mr. John Sanful Penny Shatz Rockville Links Club Virginia P. Sybert, M.D. Toku Roma & Bill Wilkinson

Visit https://www.32auctions.com/ HalloweenBashAuction2020 to bid on great prizes!

We Thank Our 2020 Sponsors

Laura Wood

Kays' Kids Camp and Teens Program

THANK YOU to the

LOUIS J. AND JUNE E. KAY FOUNDATION YOU have given each child a beautiful gift... lifelong friendships, a sense of belonging, and memories that will last forever.

YOU have allowed the parents to grow and connect - as together, they have learned from the experts and from each other and from other affected individuals.

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 Sonia Erlich

A beautiful caring woman who embodied the word strength.

She will be greatly missed.

In Our Hearts Forever

In Gratitude to

JoAnne Alter

We can’t thank you enough for 20 years of Friendship and Commitment in helping make the Bash such a success. You have generously donated your time, effort and incredible talent each and every year. We are very grateful for your on-going love and support.

All of our love,

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

With Much Gratitude to

Laura Wood of

Thank you for your incredible talent and continued support for our Halloween Bash and the NFED. We are so very grateful.

Much Love,

The Geismars

Dear Ryan, We are thrilled to be celebrating the 20th Anniversary of the Halloween Bash. For our family, it all started with you. Over the last 20 years both you and the NFED have accomplished so much. You are now attending College of Mount Saint Vincent. The NFED has helped countless families and made huge scientific advances.

We can’t wait until we can go back to enjoying sleepovers , concerts and theatrical performances and of course bike rides. We are so proud of you. We applaud your tremendous growth, strong spirit and ability to connect with people. We could not love you more.

Love always,

Grandma Alice and Grandpa Bruce

Dear Keith and Ruth, A hearty bravo to you both for the 20th year of the Halloween Bash. Through good years and not such good ones ...through pandemics, and terrorist attacks you have persevered and demonstrated how important this cause is to you and your family. You inspire us all with your resolve to help those affected by the Ectodermal Dysplasias.

May the 20th year be the best one yet.

Love,

Mom and Dad

Congratulations to Ruth and Keith on the 20th Halloween Bash from your cousins.

We love you.

XO,

Nathaniel and William, Sophia and Joshua, and Skylar

Congratulations On the 20th Anniversary of the Halloween Bash!

Louis J. and June E. Kay Foundation

A Very Special Thank You… To the ELSA Advocacy Committee & 591 Advocates across all 50 states for…

• Coming together to lead the way toward hopeful passage

of the Ensuring Lasting Smiles Act, introduced in August 2018.

• Thousands of dedicated hours on the phone, marching on

the Hill, visiting legislators, and lending a voice for every

individual with ectodermal dysplasia.

• Gathering a super-majority in the House and edging

towards one in the Senate.

NFED Family-Driven Advocacy Committee Becky Abbott, Co-Chair Julie Claeys Christine Gottschalk Lauren Rizzo Sean Vora

Kevin Koser, Co-Chair Mary Fete Karl Nelsen Jen Steele

Join us in celebrating and thanking every advocate who’s fighting for a better future for our NFED family - and all those affected by congenital anomalies!

“I have never seen a more passionate and effective group of advocates… anywhere. They are our heroes!”

-Mary Fete, M.S.N., R.N., C.C.M., Executive Director, NFED

Thank you for 20 + years of friendship!!

Dr. Jonathan Richter and the team at North Shore Cardiodontal

Continued success to the Geismar Family

The Valenti Family

Thank you for all you have done for the NFED over the past 20 years! We wouldn’t be where we are today without your dedication.

With Love,

Tim and Mary Fete

Kathi and Jeff Glass are very proud to support Ruth and Keith Geismar and the Geismar family in their wonderful work for the National Foundation for Ectodermal Dysplasias. You continue to make life so much better for so many people.

Kathi and Jeff Glass

Congratulations on 20 years of love.

Sally, Jeffrey, Rachel, Paul and Elijah

Jeff and Sally Geismar

Congratulations to our friend Ruth and the Geismar Family on The 20th annual Halloween Bash! Thank you for all the hard work you do to improve the lives of children and adults with ED.

The Plandome Heights Women’s Club

20th year in 2020!

Finally something awesome in 2020Congratulations!

Love,

Deborah, Mark, Nick, Samantha, Ella The Russo Family

Stephanie L. Rosen M.D., F.A.A.P. Great Neck Pediatric Associates, P.C. 173 East Shore Road Great Neck, New York 11023

To the amazing Geismars.

Love from the Slones!

Happy Halloween!

Your friends from

AutoTech and the Stefan Family

In Honor of Nikko, our pride and joy!

B.A. Enterprises

Honoring Allison Laskowitz for her long term dedication to this worthwhile cause.

Mary and Bruce

Congratulations to the Geismars From: Frank Catagna Rita Catagna Edward Chairman Nancy Chairman Ken Heyman Mimi Heyman Thomas Peter Di Napoli Lea Richardson Tom Richardson

WHY DO WE CLIMB? To Reach Our Hopes and Dreams!

Research is complicated. It’s expensive. It takes years of hard work and requires countless small steps — some forward and some back. But from beginning to end, it’s these small steps that can become breakthrough results. And this is what can change lives!

Working Sweat Glands and Teeth — Our XLHED project is showing us the incredible promise of in-utero replacement of missing structural proteins with their synthetic counterparts. When done at precisely the right time, this can support appropriate ectodermal structural development. We hope that this breakthrough technique might open doors for other ectodermal dysplasias.

Eye Health... for a Lifetime — Similarly, Dr. Koster hopes that the cellular tissue growth technique might eventually be used to prevent corneal abrasions in the eyes of p63 patients.

Family Guidance and Assistance — We will strive to provide support to our individuals and families, such as access to genetic testing, access to key clinical trials in the United States and abroad, diagnostic guidelines for Goltz patients, treatment and care protocols developed during our research conferences such as skin care recommendations for p63 patients, and much more.

International Research Conference — In 2021, the NFED is planning to hold its largest international conference in the United States.

There, we will discuss recent discoveries, new treatment ideas, and current projects. We will explore cutting-edge research, present stateof-the-art treatments, and explore the NFED research agenda for the next 10 years.

Healthy, New Skin — With support from the NFED, Drs. Maranke I. Koster and Peter J. Koch made an important discovery regarding skin and eye abnormalities in patients with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) and ectrodactyly-ectodermal dysplasiaclefting (EEC) syndrome. Using a cellular tissue growth technique, they are hoping to harness each patient’s own stem cells to generate new, healthy skin tissue, theoretically preventing tissue rejection and fostering more permanent skin.

Research Needed for Incontinentia Pigmenti — IP can be devastating; some of the most serious challenges include major structural and developmental impact to the eyes and neurological system. Diagnosis is important but challenging. We must advance early diagnosis, treatments and cures so babies affected with this syndrome can live long and healthy lives.

Wider, Consistent Knowledge — We continue our ongoing goal to identify the many yet unknown forms of ectodermal dysplasia. Individuals and families tell us how frustrating it is to not have a diagnosis — and the importance of being able to name their condition and more confidently manage and take control of their health — and of their future.

“I dream of a world where no child is born with severe skin erosion and does not have to face the threat of ongoing skin infections and dressing changes.”

— Ruth Geismar, mother of Ryan, AEC

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

Tim Mickelson Director of Development

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

This summer marks the first time in our history that families affected by ectodermal dysplasias couldn’t gather for Family Conference.

Our Webinar Series: Conference from your Couch occurred on the second Wednesday of every other month in 2020. They existed as opportunities to learn more about ectodermal dysplasias, symptoms, treatments and research.

The July webinars were syndrome specific and designed to provide support!

Thank You

for an amazing 20 years!