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Name
Date of Birth

Parents
Email address
Location

Courtney Jennerjohn 
February '93 

Dawn and John Jennerjohn 
dawn_j_nh@yahoo.com
Bedford, New Hampshire  USA

A. J. Sanchez 
June '92

Julie and Bob Sanchez 
juliesanchez27@msn.com
Shoreline, Washington  USA

Lizzie Dixon 
1984 - 9/26/98 

Margaret and John Dixon 
JonDxn@aol.com
Oswego, New York  USA

Michelle Clark 
1990

Christine & Jack Clark 
apertnet@ix.netcom.com
Fair Oaks, California  USA

Jeany Pak 
June '71 

Jeany Pak 
shuijeanpak@yahoo.com
Wendy Pak 
Wendy_Pak@ridleycollege.com
Thunder Bay, Ontario, Canada

Rosemarie Starr

Rosemarie and George Starr 
dakotasport@fuse.net
daystar@iglou.com
Covington, Kentucky  USA

Nicole Contrino 
November '93 

Frank and Annette Contrino 
contrino2072@gmail.com
Buffalo, New York  USA

Vivi Zhang 
August '95 

Qing Gong and 
Xiaonong Zhang 
gongqi@sch.ge.com
Albany, New York  USA

Mar Mar Iucker 
1994 

Joana Magno, MD, and John Iucker 
magnomd@aloha.net
Honolulu, Hawaii  USA

Shawn Allison 
June 1994 

Laura and Michael Allison 
gousa@gousainc.com
Kansas City, Missouri  USA

Kajsa Dohrman 
December '89 

Annalena Dohrman and Jan Gunnarsson 
mg11509@gaia.swipnet.se
Sundsvall, Sweden

Jay McGee 
1977

Danelle and Mike McGee 
No email at this time
Cresco, Iowa  USA

Patrick Bruns 
May '83

Beth & Dan Bruns 
102051.347@CompuServe.com
St. Louis, Missouri  USA

Alex Irvin 
January '90 

Amy & Dudley Irvin 
airvin@columbus.rr.com
Westerville, Ohio  USA

Krista Horning 
July 21, 1987 

Bob Horning 
Horning_Bob@htc.honeywell.com
Savage, Minnesota  USA

Meredith Leonard 
1976

Grace Leonard 
Tewksbury, Massachusetts  USA

Daryl Graham 
February '96 

Denise & Chad Graham 
onemoretime30@hotmail.com
Shelbyville, Tennessee  USA

Kyle Egan 
1979 

Debbi & Mike Egan 
debbiegan@aol.com 

Joao Byington 
1981 

Olivia Byington &
Edgar Duvivier 
evoe@Enterprise.cybernet.com.br
Rio de Janeiro, Brasil

Cecilia Wallenius
cecilia.wallenius@vattnet.com
February '82 

Lisa & Yngve Wallenius 
yngwa@nykoping.nu
Nyköping, Sweden

http://www.apert.se

Casey Deakins 
1987 

Sandy & Tony Deakins 
TDeakins1@aol.com
Orlando, Florida  USA

Adrienne Rus 
January '95 

Mary J. & Allen Rus 
RusM@osc.army.mil
Eldridge, Iowa  USA

Roddy Meeks 
August '88 

Fayrene Meeks 
fmeeksau@isd.saginaw.k12.mi.us
Saginaw, Michigan  USA

Jake Bailey 
May '96 

Laurie & Kevin Bailey 
jkb@elpaso.net
El Paso, Illinois  USA

Amy Esler 
February '91 

Ann Luxton & Howard Esler 
howrdnan@ihug.co.nz
Auckland, New Zealand

Cian Gavin 
June '96 

Carol & Simon Gavin 
simongavin@eircom.net
Sallins, Ireland

Jackie Lynn 
Wittenburg

Mark & Kathy Wittenburg 
Kathy_Wittenburg@tempe.gov
Mesa, Arizona  USA

B. J. Harmon

Mr. & Mrs. D. M. Harmon
San Antonio, Texas  USA

Andrea Gartner

medbillerchic@earthlink.net
Cape Coral, Florida  USA

Brenna Johnston 
aka Sugar Plum 
May 14, 1996 
Crouzon's Syndrome

Robyn Johnston 
robyn@ordata.com
Eugene, Oregon  USA

Ceci Kilner 
October 1994 - 
March 19, 1998

Chris and Reggie Kilner 
kilner@worldnet.att.net
ckilner@viennapat.com
Alexandria, Virginia  USA

Jonathan Siebert 
December 6, 1996

George & Brenda Siebert 
GSieb91515@aol.com

Nicolas Graves
November 26, 1991

Tim & Carol Graves 
graves5@bluemarble.net
Bloomfield, Indiana USA

Lindsay MacDonald 
April 2, 1992

Robin  MacDonald 
rmacd@rogers.com
Paris, Ontario 
Canada

Laurent Sents 
March 30, 1983 
Kniest's Syndrome

philippe.sents@pi.be
Maggy.Delbouille@CockerillSambre.be
http://www.multimania.com/kniest/

Sarah LeCara
April 4, 1997 

Tamara Pedlow (LeCara)
tpedlow@houston.rr.com
Houston, Texas  USA

Sarah Elizabeth Yenney 
1992 

Martha Palacio 
January 12, 1996 

José Palacio and Laura Pulido 
laura.pulido@cshs.org
Los Angeles, California  USA

Roxanne Chan 
November 9, 1988 

Joseph and Rose Chan 
jchan7@comcast.net
LaMirada, California  USA

Emily Krebs

Brian & Janine Krebs 
yonstein@aol.com
Long Island, New York  USA

Jordan Graham

Jennifer & Joe Graham
joeandjennifergraham@yahoo.com 
Columbia, Missouri  USA

Billy Foster

Karen Foster 
1335 Sanderson Avenue 
Scranton, Pennsylvania USA  18509 
foster@icontech.com

Jake Niemi

Steve & Elizabeth Niemi 
sniemi1@aol.com
Scottsdale, Arizona  USA

Nick Amerman

Bill & Judy Amerman 
Monroe, Michigan  USA jamerman1955@charter.net

Thomas "Seth"
Jefferson

Dori & Rick Jefferson 
83 Pine Lane 
Carbondale, Illinois  USA 
djeff@midwest.net

Nicole Miller

Jack & Raquel Miller
Sharpsburg, Georgia  USA
jnrmiller@comcast.net

Quentin Zaengle 
March 1, 1993

Joseph and Anne Zaengle
Anne.Zaengle@comcast.net 
North Wales, Pennsylvania  USA

Michael Kuras

Mark Kuras 
kurasmp@bellatlantic.net

Zoey Mathis 
January 18, 1997

Christina Mathis
zoetias_mom@sbcglobal.net
San Antonio, Texas  USA

Blake Scofield 
April 15, 1994 
Crouzon's Syndrome

Everette & Gaylann Hicks 
(Grandparents)

Carlee Williams 
June 4, 1998

Cristy & Clyde Williams 
carleesmom98@aol.com
Orange Park, Florida  USA

Jasmyn Boczkowski
cowgirl629@hotmail.com 
June 29, 1988

Patricia Smith 
res0v546@verizon.net
San Bernadino, California  USA

Kayla Smith

Mark Smith 
markandmarinasmith@charter.net
Warren, Pennsylvania  USA
Michele Smith
rednewbie0605@yahoo.com

Liz Saylan

Sapphire_Blue31@hotmail.com
Roswell. Georgia  USA

Carmen Rae Hill

Mike and Robin Hill 
carmenrae@prodigy.net
Newnan, Georgia USA

Sean Avdovich
August 5, 1987 -
May 13, 2001

Carleton Place, Ontario, Canada

Paige MacDonald

Sheila and Tom MacDonald 
SMacdo1030@aol.com
Melrose, Massachusetts  USA

Kelly Spadini
October 10, 1981

kspadini1010@hotmail.com
Roseville, California  USA

Maxine Reed

rreed3@pacbell.net
Modesto, California  USA

Miles Hubbard

Jason & Victoria Hubbard
hubbardjason@hotmail.com
England, UK

Saige Blotske
November 1, 1998

Trevor and April Blotske
tblotske@rof.net
Carbondale, Colorado  USA

Lisa Picht
July 29, 1989

Deb Picht
rldpicht@starpoint.net
Marshall, Minnesota  USA

Samantha Guyette
November 11, 1998
Samantha's Summer Adventures

Lisa and Richard Guyette
lam1126@aol.com
Camarillo, California  USA

Courtney Holt
June 3, 1998

Tim and Mechelle Holt
mholt26@aol.com
Hendersonville, North Carolina  USA

Shellie Bradley

Ryan and Martha Bradley
bradleymac5@bex.net
Toledo, Ohio  USA

Mieke Maartense
February 26, 1984

jmmaartense@zeelandnet.nl
's-Heerenhoek, Holland

Kevin Lee
December 7, 1973

NJ_Benny@yahoo.com
Hampton, New Jersey, USA

Jade Flynn-Hurley
April 15, 1998

Imelda Flynn and Dermot Hurley
irishapert@yahoo.com
Cork, Ireland

Nicholas Waldhauer
November 26, 1994

Shannon Waldhauer
losmar@bellsouth.net
Savannah, Georgia, USA

Susanna Immonen

eero.immonen@pp.inet.fi
Finland

Ashleigh Hamzsak

Carol Hamzsak
cazza28760@aapt.net.au
Victoria, Australia

Susie Lower

drsuz@peoplepc.com
Iowa City, Iowa, USA

Aryaman Singh
July 27, 1999

Lt. Commander Arjun Rana and 
Mrs. Anju Rana
arjun_rana@hotmail.com
Bombay-Colaba, India

Mason Pittman
February 9, 1999

Karin Meadows
karinmeadows@hotmail.com
Denver, Colorado, USA

Dannyellee Schafer

Kathy Sparks
Sparks884@cs.com

Joshua Benson Lemon

Pete Lemon

Peach  
tessier facial cleft

baconsmith@shaw.ca

Maile Ogata
October 1999

Ernest & Cindy Ogata
pawsiewawsie@aol.com
Honolulu, Hawaii  USA

Mollie Anne Pedigo
March 23, 1994

The Pedigos
email and address withheld by request

Jenny Brown
November 11, 1966

No email address at this time
Savannah, Georgia  USA

Maggie Doherty

Steve and Claire Doherty
srdohert@mpx.com.au
Tamworth, Australia

Morgan McGahan

Lisa & Bill McGahan
mcgahanfamily@comcast.net
Short Hills, New Jersey  USA

Todd "TJ" Johnsen
May 22, 1980

Dan and Amy Johnsen
ajmoon@opexonline.com
Sandwich, Illinois  USA

Debbie Drop

tvee428@aol.com

Shayne Stillar
1966

spsbike@hotmail.com
International Falls, Minnesota USA

Annie Sky& Ellie Star
February 20, 1993

Melody Sky

Marina Isaacs
August 29, 2000

Maria and Forrest Isaacs
sevilla777@cox.net
Tucson, Arizona  USA

Moisé Cunha
April 10, 1998
Moisés Page in Brazil

Rosângela and João Carlos Cunha
moisesapert@ig.com.br
rdgcunha@bol.com.br
Rio de Janeiro, Brasil

Cheong Kai Lin
January 17, 1997

May Thien & Cheong
maycsc@mbox3.singnet.com.sg
Singapore

Chris & Tony Sapp
March 11, 1988

Patty Sapp
menasgram@aol.com
West Palm Beach, Florida USA

Oscar Ocaña
April 15, 2000 -
December 9, 2005

Rosa María and Enrique Ocaña
rabaco@prodigy.net.mx
cocodeagua@hotmail.com
Querétaro Qro, México

Doneen Key

doneenk@yahoo.com
Madison, North Carolina  USA

Matthew Whitten
February 6, 2001

Cheryl and David Whitten
Mama24Cheryl@aol.com
Mercedes, Texas, USA

Andrew Hartley
April 30, 1998

Rich & Karen Hartley
rich.hartley@yoh.com
Collegeville, Pennsylvania  USA

Eric Dudley
December 30, 1993

David and Sandy Dudley sdudley@qwest.net
Littleton, Colorado  USA

Anna Baker
April 1, 2000
Pfeiffer syndrome

Tammy Baker
no email at this time
Paradise, California  USA

Preben Wilsgård

Lisa Wilsgård
wilsga@online.no
Norway

Maria Elena Servin
June 2, 1999 - 
July 13, 2001

A memorial page by Lisa Guyette

Samantha Blythe
November 5, 1980

GroovyWheeler@comcast.net
Philomath, Oregon  USA

Brooklyn Nicholl
December 23, 1997

Travis and Julianna Nicholl
jaynicholl@charter.net
Fort Worth, Texas  USA

Frans Wallenberg
1963

f.frasse@bredband.net
Jakobsberg, Sweden

Freddie Casavant
February 5, 1959 -
September 22, 1972

Nora Jacobs
n.jacobs@sasktel.net
Saskatoon, Saskatchewan, Canada

Sabrina Robineau
April 9, 1989
Pfeiffer syndrome
sabrinarobineau@hotmail.com

Jo-Anne Perras
joanneperras@hotmail.com
Gatineau, Quebec Canada

Brodie Bullock
June 18, 2001 -
January 20, 2004
Pfeiffer syndrome

Sharon Bullock
sharonbullock@msn.com
Cincinnati, Ohio USA

Palko Kočárik

Peter and Zuzana Kočárik
kocarikp@marta.sk
Slovakia

Raymond Gilbreath
July 7, 1992

Ray and Michelle Gilbreath
raymichgil@msn.com
Olympia, Washington USA

Henry Morgan Johnson
June 15, 2002

Rachel and T.J. Johnson
Turlock, California USA

Marcus Cantu

Alma Cantu
cantual@hotmail.com
Dallas, Texas  USA

Tiril and Veslemøy Taule

Morgan and Lise Taule
morg-tau@online.no
Norway

La'Jada Colon-Howard
February 9, 1997

Thomas and Karen Colon-Howard
takeesha@pmcol.com
Pageland, South Carolina USA

Paden Jolley

Jeff and Jolene Jolley
yeehaw1475@yahoo.com
Tooele, Utah USA

Robert Kale
May 30, 2001

Debbie and Brian Kale
debbie at ekale dot com
Leesburg, Virginia  USA

Emma Wood

Hannah Donnelly
February 14, 2001

Pearl & Michael Donnelly
pmhdonnelly47@eircom.net
Ireland

Callie Hanson
September 21, 2002

Randy & Cari Hanson
calliejohanson@insightbb.com
Wyanet, Illinois USA

Evan Milburn
June 1, 1996

Marianne Camous
camous@earthlink.net
San Carlos, California  USA

Dan Alliot

SirDan386@wmconnect.com
Florida, USA

Kyle Thornton
October 8, 2002
Crouzon Syndrome

Len & Amy Thornton len@lenthornton.com amy@amythornton.com
Newfane, New York, USA

Jayden Micah Hooker
October 29, 1999 - January 13, 2003

Mesha March (Aunt)
ahsem@earthlink.net
Farmington, New Mexico  USA

Mark Dubas
January 17, 1964

murphy@plattevalley.net
Columbus, Nebraska  USA

Dustin Wright
October 28, 2002

Rob & Toni Wright
noreenmccarron@shaw.ca
Victoria, British Columbia, Canada

Sarahi Silva
February 9, 2000

Jessica and Pedro Silva
jessicaisilva@hotmail.com
Houston, Texas  USA

Seth Swihart

Stacy and Mitch Swihart
mythreekids@neo.rr.com
Canton, Ohio  USA

Charlene Walker
January 4, 1973

simba001@gbronline.com
Albuquerque, New Mexico  USA

Kaylee Santiago
May 4, 2000

Tonya Thorpe
gopatstanya@aol.com
Pittsburgh, Pennsylvania  USA

Rena Powitz
October 4, 2001

David and Tzilla Powitz
zilladavid@yahoo.com
Far Rockaway, New York  USA

Katey Spears
August 27, 1995

Jennifer and Billy Spears
jennspears1@aol.com
Clermont, Florida  USA

MacKenzie Weber-Silva
November 17, 1999
pfeiffer syndrome
http://www.pfeiffers.itgo.com

Danielle Silva
Backyardiganmom@yahoo.com
Herlong, California  USA

Darren Potter
February 27, 2002
EEC Syndrome

Dave and Cat Potter
catherine.potter@verizon.net
Hickam AFB, Hawaii  USA

David Banner
October 8, 1946

dbanner@techline.com
Cosmopolis, Washington  USA

Shirley Barnett
June 9, 1993

Alice and Bill Barnett
BBarn60368@aol.com
Lake Mary, Florida  USA

Shara Flores
May 17, 2001

Bernard and Heather Flores
thefloresfam@sbcglobal.net
Oroville, California  USA

Shyan JiaLi Stewart
June 23, 2003

Dennis and Rebecca Stewart
rstewart246@charter.net
Scottsboro, Alabama  USA

Ashanti Kristina
April 1, 2003

Barry and LaQuinta

Lillian
March 18, 2003

John and Jasmine

Olivia Marie Sanborn
December 23, 2002
Pfeiffer syndrome

Mark and Laurel Sanborn
Laurelsanborn@cs.com
Richmond, Vermont  USA

Avery Murden
July 31, 2001

Richard & Andrea Murden
mail@murdenfamily.com
Chesapeake, Virginia  USA

Michelle Robertson
September 5, 1980

keleahsmygirl@hotmail.com
Franklin, Wisconsin  USA

Letícia Figueiredo
July 5, 1996

Celso & Débora Figueiredo

São José dos Campos,  Brasil

Ava Marie Beeler
February 13, 2003
Craniosynostosis with cloverleaf

Malcolm and Laura Beeler
lmabeeler@comcast.net
Portland, Connecticut  USA

Beeler Family Website

Ryan Craig
September 1, 2000

Shane Craig and Julie Blakey
julieblakey1980@yahoo.com
Vine Grove, Kentucky  USA

Alex Rodriguez
1979

alxalx21@netscape.net
Pembroke Pines, Florida  USA

Jessica and Ashley Bock
(Ashley has Apert)
June 29, 2004

Mike and Lisa Bock
lmichlik@sbcglobal.net
Houston, Texas  USA 

Dave Johnson
November 30, 1938

Dorothy Hunt (Dave's sister)
dotandbill@shaw.ca
Sault Ste Marie, Ontario  Canada

Antonio Estrada
July 12, 2003

Antonio and Hope Estrada
hopee78210@yahoo.com
San Antonio, Texas  USA

Emma Freimark
June 3, 2000

Kym Freimark
kymmyf@yahoo.com
Portland, Oregon  USA

Ashley Marie Vella-Zarb
May 13, 2003
Pfeiffer syndrome

Annette Vella-Zarb
annette@barcroft.com
Sarnia, Ontario  Canada

Trey Shaw
July 2, 1998

Ross Shaw
sjshaws@earthlink.net
San Jose, California  USA

Evan Meder
June 13, 2004

Margaret and Randy Meder
mmeder@earthlink.net
Raleigh, North Carolina  USA

Sam Murphy
December 29, 1997

Bill and Angie Murphy
coloradomurpheys@adelphia.net
Colorado Springs, Colorado  USA

Ashlee Abramson

superashlee365@hotmail.com
New Westminster, British Columbia
Canada

Luciano Cervera
June 22, 2004

Victor Cervera
luciano_c_v@yahoo.es
Peru

Molly Egan
December 6, 2002

Patrick and Pattie Egan
pategans@yahoo.com
Sacramento, California  USA

Marco Garcia
July 21, 1981

Mormonkiko@hotmail.com
Brownsville, Texas  USA