15th Annual Halloween October 19th â 31st
15th Annual Halloween
Bash Journal October 19th — 31st
October 2015
Dear friends, Fifteen years ago, we had a simple desire. We wanted to give back to the NFED, an organization that helped our family after Ryan's traumatic birth. This desire became the impetus for the Halloween Bash.
We experienced an outpouring of love and support from people like you and the event grew to be the largest fundraiser for the National Foundation for Ectodermal Dysplaisas (NFED). We are proud that, together, we have raised more than $3.7 million.
Today, we are hosting Halloween Bash 2015 as a virtual event with an online auction and journal. The success of the last two years has shown that it continues to be a way for us to come together in our shared passion to make life better for individuals affected by ectodermal dysplasias.
At home, our family experienced big changes this fall when we dropped our oldest son, Jack, off for his freshman year at Syracuse University. We miss him and are adjusting to the new, quieter reality of just two sons to drive to school and activities. Ryan turns 17 next month, which is incredible. He’s a happy teenager who brings us pure joy every day.
Research continues to advance for the ectodermal dysplasias because of the NFED and the support of the Halloween Bash. Edimer Pharmaceuticals has administered a replacement protein, EDI200, to 10 babies born with the most common ectodermal dysplasia, called XLHED. We wait anxiously as they analyze the data to determine the impact of the treatment.
For AEC syndrome, the form of ectodermal dysplasia that affects Ryan, families provided skin biopsies this summer for a research project spearheaded by Dr. Maranke Koster at the University of Colorado. Dr. Koster is working to grow healthy skin from stem cells to help the severe skin erosion characteristic of AEC. Her research lab has learned that these skin erosions caused by the p63 gene also affect another ectodermal dysplasia. Her work is the first step towards developing treatments for babies suffering from skin erosion. This progress for AEC has come in the last 15 years as a direct result from the Halloween Bash – and you!
We especially thank our amazing committee who has helped us each and every year. Their efforts are paying off as we watch the ectodermal dysplasias research make great strides toward increased understanding and improved treatments.
We are so grateful to all our supporters, our silent auction donors and our friends and family for their continued support. Thank you for helping in our cause, for helping us to give back and to make life better for all NFED families.
With love and gratitude,
Ruth and Keith Geismar
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 Friends, It is time for Trick or Treating, the days are shorter and cooler, and the beautiful autumn season is here. It’s time for the Annual Halloween Bash! For 15 years, the Geismar family has hosted this very special event to benefit the National Foundation for Ectodermal Dysplasias. This amazing family, with the help of their committee members, has single handedly impacted the mission of the NFED by raising more than $3.7 million throughout the years. Because of your generous donations; children who never smiled before, now smile with their new dentures and adolescents go to prom and graduate from high school with bright new smiles to match their bright futures! Adults have teeth for the first time ever. It is a beautiful thing to witness, children going from never smiling to grinning from ear to ear nonstop. You have helped many people but the need greatly outweighs our resources. The NFED is proud to report some significant strides in research. Ten babies have now been treated with EDI200, a replacement protein for EDA, a protein important in the development of hair, teeth, and exocrine glands (e.g., sweat and salivary glands). Individuals with XLHED cannot produce EDA thus the need for a replacement protein. A clinical trial is testing the effectiveness of this replacement protein, EDI200, for newborn boys with the mutation. We are anxiously awaiting the analysis of the data. Dr. Koster, at the University of Colorado, continues her work with p63 and is making significant advancements in her research for Hay-Wells syndrome (the devastating syndrome that affects Ryan Geismar). We are very hopeful that we will have the break through results from her research in the near future. Many families have been supported through our numerous programs and our family conferences. None of this would have happened without your financial assistance over the past 15 years. You played a huge part in these accomplishments and made a big difference in the lives of those affected by these rare disorders. Can we count on you again to further our mission to support more research, financial aid, and programs that directly benefit our NFED families? I would like to thank the Geismar family, the committee members and you who so generously support the Halloween Bash! Let’s continue to create smiles together! The need is greater than ever. On behalf of the NFED and the families we serve, thank you with all of my heart! With warmest regards,
Mary Fete Executive Director
A Special Thanks to Our Online Auction Donors
54 Below Ben’s Deli BLT Steak House Susan Boughner Brooklyn Museum Brooklyn Museum/Ed Bleiberg Michael Bruno, DMD Steffanie Cannarelli Hope Catalano Linda Cohen Carla Ehrlich Equinox Fitness Clubs D. Exterior Seth Ferris Keith & Ruth Geismar Genesis Hair Salon Michael Glick Andrew Katz/The Helping Hands Lola Lusardi’s Restaurant MCC Theater
Jill & Andrew Mesologites New York Kids Club Dee Dee & Alan Olsen Om Sweet Om Parlor Steak and Fish Pasta Pasta Public Theatre Pure Barre East Setauket Judith Ripka Roundabout Theatre Joe Scully/Grandstand Sports Penny Shatz Mark & Mary Steingesser Lynn Stoller T-B Steak and Lounge The Fhitting room The Nines The Writing Room Roma & Bill Wilkinson Yoko Ono Lennon/Bag One Arts
2015 Sponsors
Excellent Food Products are wishing the NFED another blockbuster year!
Elliot & Nancy Merberg
Dearest Ryan, Your growth and humor are both inspiring. What a wonderful young man you have become. We love spending time with you when we can. Uncle Bob and I are very proud of you and all of your accomplishments. We wish you only the best now and forever! Love you now and always,
Aunt Jill and Uncle Bob
Thank You
Louis J. & 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.
Our Special Thanks and Appreciation to
Laura Wood
for her continued support of the Halloween Bash and the NFED. We are so very grateful. Thank you for all you do!
Ruth & Keith Geismar Bruce & Alice Geismar
“As always, we are awed by the continued dedication and determination of the NFED and Keith and Ruth Geismar. We feel lucky to call you family and friends.” Love always,
Jennifer, Peter, Nathaniel & William
In appreciation of JoAnne Alter of
Thank you for 15 years of friendship towards the Halloween Bash & the NFED. Your guidance and advice as well as your talented efforts have made an enormous difference. We are so grateful. Love, The Geismars
Wishing You All the Best On
Number 15!
Your Dedication is an Inspiration to All Who Know you.
North Shore Cosmetic & Implant Dentistry Debbie, Jonathan, Zachary, Gabriella and Adam
In Honor of Ruth and Keith Geismar for
15 years of unwavering dedication to the NFED
Their commitment to this cause is remarkable.
We applaud them.
With love,
Mom and Dad
Dear Ryan, You astonish us with your growth and winning personality. We’re so proud of you and how far you’ve come. We wish you continued happiness always.
All our love, now and always,
Grandma Alice and Grandpa Bruce
In Appreciation of the Hard Work, Dedication & Friendship of the
We are So Grateful for Your Support!
Ryan, where have almost 17 years gone! You are and have always been so sweet, kind and most of all loving. We always look forward to your warm hugs and kisses whenever we see you. You are so special to us. We always look forward to seeing you overcome any obstacle that comes your way and all of your accomplishments!
We love you with all our hearts!
Uncle Mark, Aunt Suzanne, Brooke and Nicole
Dearest Ruth, Keith, Jack, Ryan & David, We are proud to support the NFED. Much love,
Christina, Marc and Lucas Sher
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.
Much love always,
Nanny Sonia and Poppy Henry
We are always happy to support the Geismar Family and the NFED.
Suzanne and Robert Harwood
Dear Geismars, Your wonderful spirit is contagious! Love, The Slone Family
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
We salute the
for Ectodermal Dysplasias.
NFED and the Geismars Mac Ferris and Donna Newton
Brooke W. Gelb Vice President Client Relations Halcyon Asset Management LLC 477 Madison Ave, 8th Floor New York, NY 10022 TEL: +1 212 303 9486 Fax:+1 646 497 1508 Mobile:+1 917 496 7367 [email protected] www.halcyonllc.com
Dry Cleaning & Shirt Laundering
(516) 883-9571
COUNTRY CLEANERS 1 Manorhaven BLvd Port Washington, NY 11050 Same Day Service Expert Training
All Work Done on Premises Pick up & Delivery Service
In honor of the Geismar Family. Compliments of Marcie Rosenberg
2016 Family Conference Attendees in Colorado Springs
We Applaud the Dedication and Commitment
The NFED Staff
Friends of the NFED
Wendy B. Berlin & Family Nancy and Edward Chairman Thomas DiNapoli Anne Dorogoff Ken and Mimi Heyman Joel and Lynne Mesznik Susan Papaioannou Michael and Jill Gold
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 Sandy Grayson Scott Hamroff Carol Hanover Sandy Hyman Steffanie Cannarelli Flora Kamhi Laurie Quinn Knapic Allison Sealove Laskowitz Elizabeth Beil Lewis Lauren Malone Elliot Merberg Jill Mesologites Jennifer Mihajlov Lynne Negron Rona Nelson 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 Bill Wilkinson Roma Wilkinson
Our Heartfelt Thanks to Each Member of Our Amazing Event Committee
Bash Journal October 19th — 31st
October 2015
Dear friends, Fifteen years ago, we had a simple desire. We wanted to give back to the NFED, an organization that helped our family after Ryan's traumatic birth. This desire became the impetus for the Halloween Bash.
We experienced an outpouring of love and support from people like you and the event grew to be the largest fundraiser for the National Foundation for Ectodermal Dysplaisas (NFED). We are proud that, together, we have raised more than $3.7 million.
Today, we are hosting Halloween Bash 2015 as a virtual event with an online auction and journal. The success of the last two years has shown that it continues to be a way for us to come together in our shared passion to make life better for individuals affected by ectodermal dysplasias.
At home, our family experienced big changes this fall when we dropped our oldest son, Jack, off for his freshman year at Syracuse University. We miss him and are adjusting to the new, quieter reality of just two sons to drive to school and activities. Ryan turns 17 next month, which is incredible. He’s a happy teenager who brings us pure joy every day.
Research continues to advance for the ectodermal dysplasias because of the NFED and the support of the Halloween Bash. Edimer Pharmaceuticals has administered a replacement protein, EDI200, to 10 babies born with the most common ectodermal dysplasia, called XLHED. We wait anxiously as they analyze the data to determine the impact of the treatment.
For AEC syndrome, the form of ectodermal dysplasia that affects Ryan, families provided skin biopsies this summer for a research project spearheaded by Dr. Maranke Koster at the University of Colorado. Dr. Koster is working to grow healthy skin from stem cells to help the severe skin erosion characteristic of AEC. Her research lab has learned that these skin erosions caused by the p63 gene also affect another ectodermal dysplasia. Her work is the first step towards developing treatments for babies suffering from skin erosion. This progress for AEC has come in the last 15 years as a direct result from the Halloween Bash – and you!
We especially thank our amazing committee who has helped us each and every year. Their efforts are paying off as we watch the ectodermal dysplasias research make great strides toward increased understanding and improved treatments.
We are so grateful to all our supporters, our silent auction donors and our friends and family for their continued support. Thank you for helping in our cause, for helping us to give back and to make life better for all NFED families.
With love and gratitude,
Ruth and Keith Geismar
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 Friends, It is time for Trick or Treating, the days are shorter and cooler, and the beautiful autumn season is here. It’s time for the Annual Halloween Bash! For 15 years, the Geismar family has hosted this very special event to benefit the National Foundation for Ectodermal Dysplasias. This amazing family, with the help of their committee members, has single handedly impacted the mission of the NFED by raising more than $3.7 million throughout the years. Because of your generous donations; children who never smiled before, now smile with their new dentures and adolescents go to prom and graduate from high school with bright new smiles to match their bright futures! Adults have teeth for the first time ever. It is a beautiful thing to witness, children going from never smiling to grinning from ear to ear nonstop. You have helped many people but the need greatly outweighs our resources. The NFED is proud to report some significant strides in research. Ten babies have now been treated with EDI200, a replacement protein for EDA, a protein important in the development of hair, teeth, and exocrine glands (e.g., sweat and salivary glands). Individuals with XLHED cannot produce EDA thus the need for a replacement protein. A clinical trial is testing the effectiveness of this replacement protein, EDI200, for newborn boys with the mutation. We are anxiously awaiting the analysis of the data. Dr. Koster, at the University of Colorado, continues her work with p63 and is making significant advancements in her research for Hay-Wells syndrome (the devastating syndrome that affects Ryan Geismar). We are very hopeful that we will have the break through results from her research in the near future. Many families have been supported through our numerous programs and our family conferences. None of this would have happened without your financial assistance over the past 15 years. You played a huge part in these accomplishments and made a big difference in the lives of those affected by these rare disorders. Can we count on you again to further our mission to support more research, financial aid, and programs that directly benefit our NFED families? I would like to thank the Geismar family, the committee members and you who so generously support the Halloween Bash! Let’s continue to create smiles together! The need is greater than ever. On behalf of the NFED and the families we serve, thank you with all of my heart! With warmest regards,
Mary Fete Executive Director
A Special Thanks to Our Online Auction Donors
54 Below Ben’s Deli BLT Steak House Susan Boughner Brooklyn Museum Brooklyn Museum/Ed Bleiberg Michael Bruno, DMD Steffanie Cannarelli Hope Catalano Linda Cohen Carla Ehrlich Equinox Fitness Clubs D. Exterior Seth Ferris Keith & Ruth Geismar Genesis Hair Salon Michael Glick Andrew Katz/The Helping Hands Lola Lusardi’s Restaurant MCC Theater
Jill & Andrew Mesologites New York Kids Club Dee Dee & Alan Olsen Om Sweet Om Parlor Steak and Fish Pasta Pasta Public Theatre Pure Barre East Setauket Judith Ripka Roundabout Theatre Joe Scully/Grandstand Sports Penny Shatz Mark & Mary Steingesser Lynn Stoller T-B Steak and Lounge The Fhitting room The Nines The Writing Room Roma & Bill Wilkinson Yoko Ono Lennon/Bag One Arts
2015 Sponsors
Excellent Food Products are wishing the NFED another blockbuster year!
Elliot & Nancy Merberg
Dearest Ryan, Your growth and humor are both inspiring. What a wonderful young man you have become. We love spending time with you when we can. Uncle Bob and I are very proud of you and all of your accomplishments. We wish you only the best now and forever! Love you now and always,
Aunt Jill and Uncle Bob
Thank You
Louis J. & 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.
Our Special Thanks and Appreciation to
Laura Wood
for her continued support of the Halloween Bash and the NFED. We are so very grateful. Thank you for all you do!
Ruth & Keith Geismar Bruce & Alice Geismar
“As always, we are awed by the continued dedication and determination of the NFED and Keith and Ruth Geismar. We feel lucky to call you family and friends.” Love always,
Jennifer, Peter, Nathaniel & William
In appreciation of JoAnne Alter of
Thank you for 15 years of friendship towards the Halloween Bash & the NFED. Your guidance and advice as well as your talented efforts have made an enormous difference. We are so grateful. Love, The Geismars
Wishing You All the Best On
Number 15!
Your Dedication is an Inspiration to All Who Know you.
North Shore Cosmetic & Implant Dentistry Debbie, Jonathan, Zachary, Gabriella and Adam
In Honor of Ruth and Keith Geismar for
15 years of unwavering dedication to the NFED
Their commitment to this cause is remarkable.
We applaud them.
With love,
Mom and Dad
Dear Ryan, You astonish us with your growth and winning personality. We’re so proud of you and how far you’ve come. We wish you continued happiness always.
All our love, now and always,
Grandma Alice and Grandpa Bruce
In Appreciation of the Hard Work, Dedication & Friendship of the
We are So Grateful for Your Support!
Ryan, where have almost 17 years gone! You are and have always been so sweet, kind and most of all loving. We always look forward to your warm hugs and kisses whenever we see you. You are so special to us. We always look forward to seeing you overcome any obstacle that comes your way and all of your accomplishments!
We love you with all our hearts!
Uncle Mark, Aunt Suzanne, Brooke and Nicole
Dearest Ruth, Keith, Jack, Ryan & David, We are proud to support the NFED. Much love,
Christina, Marc and Lucas Sher
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.
Much love always,
Nanny Sonia and Poppy Henry
We are always happy to support the Geismar Family and the NFED.
Suzanne and Robert Harwood
Dear Geismars, Your wonderful spirit is contagious! Love, The Slone Family
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
We salute the
for Ectodermal Dysplasias.
NFED and the Geismars Mac Ferris and Donna Newton
Brooke W. Gelb Vice President Client Relations Halcyon Asset Management LLC 477 Madison Ave, 8th Floor New York, NY 10022 TEL: +1 212 303 9486 Fax:+1 646 497 1508 Mobile:+1 917 496 7367 [email protected] www.halcyonllc.com
Dry Cleaning & Shirt Laundering
(516) 883-9571
COUNTRY CLEANERS 1 Manorhaven BLvd Port Washington, NY 11050 Same Day Service Expert Training
All Work Done on Premises Pick up & Delivery Service
In honor of the Geismar Family. Compliments of Marcie Rosenberg
2016 Family Conference Attendees in Colorado Springs
We Applaud the Dedication and Commitment
The NFED Staff
Friends of the NFED
Wendy B. Berlin & Family Nancy and Edward Chairman Thomas DiNapoli Anne Dorogoff Ken and Mimi Heyman Joel and Lynne Mesznik Susan Papaioannou Michael and Jill Gold
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 Sandy Grayson Scott Hamroff Carol Hanover Sandy Hyman Steffanie Cannarelli Flora Kamhi Laurie Quinn Knapic Allison Sealove Laskowitz Elizabeth Beil Lewis Lauren Malone Elliot Merberg Jill Mesologites Jennifer Mihajlov Lynne Negron Rona Nelson 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 Bill Wilkinson Roma Wilkinson
Our Heartfelt Thanks to Each Member of Our Amazing Event Committee
