Cystinosis Email List

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Last Update: January 17, 2001

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NameEmailWho Are You?Where Are You From?
Jean Hotz jd2hotz@qnis.net President, Cystinosis Foundation Fresno, California
Jonathan Terry jonathan.terry@cystinosis.demon.co.uk Founder, "Cystinosis Foundation UK & Eire"
Adult Cystinotic		 Reading, England
Tom MelangUncletom22@aol.com Adult Cystinotic, Board Member, MentorWashington
Colleen & Jack Hammond chalham@aol.com Parents to Shea Born 1989 and Kayla Born 1987Burlington, Massachusetts
Portia Devine and Joanie Devinegsixmh_2000@yahoo.comParent of Joanie (Born 1989)Waynesville, NC
Mike & Leslie McGregormike.mcgregor@sympatico.caParents of Jared (born1989)Ontario, Canada
Jane Harrison Lemarjlemar243@yahoo.comParent of Sarah & KatelynWashington
Carl & Terri Schleuder cschleuder@bignet.net Parents 
Robert & Sylvia Douglashomerun@kvmo.netParents of AmeliaMissouri
Phil Stinsonpmstinson@aol.comParent of Matthew 
Mary CoxCRATGRNST@aol.comParent of StephanieChicago, Illinois
Stephanie CoxOICLILBIT@aol.comPatient- 14 years oldChicago, Illinois
Judy Gordonjgordon@gtn.netLindsay Wells' motherLondon, Ontario, Canada
Lindsay Wellslwells@gtn.netAdult Cystinotic (20yrs old)London, Ontario, Canada
Frank & Karen RitchieFrank@cystinosis.comParents of Zack Born 1987 and Frankie Born 1982
Board Members, Foundation Webslave		Rocklin, California
Garry & Carol Hughes CLHughes4178@aol.com Parents of Jennell Born 1983
and Heidi Born 1985		Vero Beach, Florida
Bara & Steve Sargenttomsam@concentric.netParent's of Tom, age 14Maine
Bonnie & Richard Clarkrclark21@home.comParent's of David, age 16London, Ontario, Canada
Lynn PottsDPotts4209@aol.comAdult Cystinotic 
Richardo Ricohamelin@mail.nadir.orgParent of Romy, 3yrs old from CubaGermany
Horst & Claudia BruggerHBru201510@aol.comParents of Nicole, (Born 1991)Germany
Suzanne Bowerssuebowers@Hotmail.comMother of Erin, Adult CystinoticSacramento, California
Pam Woodwardwoodward@inconnect.comMother of Tahnie, age 14Utah
Tahnie Woodwardsugar_angel@geocities.comPatient, age 14Utah
Leanne & Darrell Keeniemanager@dufferinmuseum.comParents of Hannah (Born 1994)Orangeville, Ontario, Canada
Lesley Mellors113112.3633@compuserve.comParent of Amy, age 9 and Beth, age 6 
J.T. & Frankie McGinnisjfmcginnis95@yahoo.com Parents of LauraSouth Carolina
Shane HageneShane266@aol.comPatient, born 1974Chicago, Illinois
Mike & Sue Hammermshammer@sbceo.orgParents of Annaliese, Born 1993Lompoc, California
Osnat & Shalom Pintospinto@zahav.net.ilParents of Noam, born 1997Israel
Jennifer RoyRjenni@aol.comParent of Katie born in 1992Franklin, Tennessee
Don & Doretta Hoffmanndhoffman@storycity.net Parents of Andrew (Born 1988)Story City, Iowa
Cheri & Matt Friendcheri.friend@atl.sungardtrust.comParents of Morgan, age 4Atlanta, Georgia
Brian P. Smithbpsmith@primenet.comPatient, born 1978 Costa Mesa, California
Keith Dufraneknm@sisna.comParent of Amanda Rose Dufrane Mesquite, Nevada
Lonnie Hohllonniehohl@aol.comMidwest Facilitator & Father of Keri (Born 1986) Sioux City, Iowa
John HohlJahohl@aol.comMidwest Facilitator & Mother of Keri (Born 1986)Sioux City, Iowa
Edevaldo & Cicera MelloLMMELL@aol.comParents of Ellen and Emily (patient)Naugatuck, Conneticut
Kym CarronKym@cabra.demon.co.ukParent of Benjamin, age 7 Scotland, U.K.
Brenda HolcombMy596992@aol.comParent of Chelsea, age 6 Clendenin, West Virginia
Ranjit & Satinder Seehra100131.442@compuserve.comParents of Eashar (born 1997) Derby, England, UK
Judi Stephenxmaself@earthlink.netAdult Cystinotic, (Born 1962) Togard, Oregon
Jessica Teiberis wiz@murlin.comParent of Cozette (born Oct. 15, 1992) Sedalia, Missouri
Sara WisemanS.Wiseman@lse.ac.ukAdult Cystinotic, born 1978London, England
Rick & Victoria Maurervmaurer@tpk.netParents of Richard (Max)
Born 1994		Enfield, New Hampshire
Marcos Lanussemalanus@hotmail.comfather of Agustin (8 years old)Buenos Aires, Argentina
Leslie & Mick Mellors113112.3633@compuserve.comParents of Amy 9 and Beth 6Washington, England
Lynn & Larry Thomaslthomas@localnet.comParents of Garret, age 3Buffalo, New York
Rebecca Aldertonz.e.turtle@rmi.netParent of Ethan, age 5 has cystinosis
Zachary and Roland		Pueblo, Colorado
Pat & Cass HubertDaytrpr12@aol.comParents of "Pat-Pat" age 3Lockport, Illinois
Tim & Julie
Di Prinzio		tim@diprinzio.org
julie@diprinzio.org		Parents of Daniel,
Born August 25, 1992		Bethlehem, PA
Sarah MelangKidbeano@aol.comAdult Cystinotic (born 1972)Seattle, Washington
Patrick MaloneMelmmom@aol.comAdult Cystinotic, age 21Medina, New York
Andre & Gaarmel FunchessSTUDSCS@aol.comparents of 3, Anasaja has cystinosis (18 mo.)Jackson, Mississippi
Ruth Finchrfitch@sympatico.caA friend whose 6 yr old daughter has cystinosis.  
Sibylle MenkeSMenke92@aol.comAdult Cystinotic, 34 yrs oldGermany
Cheryl Burnsckburns@ibm.netMother of Paul (born 1973) and Lindsay Burns (born 1976) Brampton, ON
Gina &Glenn Houstonhouston@mail.contact.netParents of Kim 16 & Dave 14
English ou Francais		 Canada
Holli & Mike IndyckCaemh5@aol.comMother of Chelsea Heath, age 6Wareham, Massachusetts
Angela R. BeckABeck87068@aol.comMother of Koby Dylan Beck,
Born January 31, 1995		Elm Mott, Texas
Larry Beckbearclaw@vvm.comFather of Koby Beck,
Born January 31, 1995 		Belton, Texas
Paula Fryepjfrye@nconnect.netAdult Cystinotic, born 1970Salem, Wisconsin
Valerie Bishopvaleriebishop@hotmail.comAdult Cystinotic (37 years old)Michigan
Steve and Pam KrenzerShkrenzer@home.comParents of EthanOrange Co. California
Jessica CicconiIAmCrow@aol.com19 year old cystinoticPittsburgh, Pennsylvania
Robert & Paula Yacoubryacoub@one.net.auParents of Karim (born 1996)Victoria, Australia
Gary DeVaultgdevault@soltec.netUncle of 7 year old boy 
Bruce & Merle MundSacto3840@aol.comVP/Secretary, Cystinosis Foundation
Parents of Daughter with Cystinosis		San Jose, California
Scott & Sandy HuntVTNKT@aol.com Parents of Anthony, age 4New Hebron, Mississippi
Claudia & Hans-Otto SproedtClaudia.Sproedt@t-online.de Parents of Christian (born 1986)Ratingen (near Cologne) / Germany
John AldertonRenee291@juno.com Father of EthanPueblo, Colorado
Amanda & Leigh Daviesleighdavies@trauma.freeserve.co.uk Parents of JamesWarminster, United Kingdom
Wolter & Jan Steenstra nachtstroper@hetnet.nl Adult Cystinotic (Born 1964)kommerzijl, Netherlands
Joanna Head twhead@t-online.de Adult Cystinotic (28 yrs old)
Is fluent in German and English		Munich(Germany)
Mack Maxwellmackm@flash.net Adult Cystinotic Burleson, Texas
Deborah Seidledseidle@popmail.ucsd.edu Billing Coordinator
Cystine Determination Lab at UCSD		UCSD, San Diego, Ca.
Ricky & Darlene Gibbscheyenne@apex.net Parents of CheyenneKentucky
Victor Gomezvictor_gomez1@usa.net Adult CystinoticMexico City, Mexico
Tony & Ruth Ann Ahnenta0054@erols.com Parents of Katie (9 years old)Sellersville, PA
Troy & Fran RormanTRorman@aol.com Parents of Ellen Rorman - born 4/15/92Eagan, Minnesota
Lesley Cogarleslie_hope_1992@hotmail.com Daughter of Tina & Bennie Cogar - born 1992Webster Springs, West Virginia
Tina Cogarcogarfam@mtech.com Mother of Lesley (born 1992)
and Brittany (Born 1987)		Webster Springs, West Virginia
Robert & Jane BechtRoJa4@aol.com Parents of Cody, Age 12 with Cystinosis
and Nick Age 15		Menomonee Falls, Wi.
Denise Teeterteeterd@yahoo.com Mother of Amber Teeter, Born October 7, 1992Allen, Texas
Laila & Bjorn RothBjorn.Roth@ifm.uib.no
Laila.l@sensewave.com		 Parents of Andreas,
Born 1998		Bergen, Norway
Aud & Oyvind Rothoyvind.roth@rl.telia.no Grandparents of Andreas Roth (Born 1998)Stavanger, Norway
Solrun & Gunvar Eriksengu-eriks@online.no Parents to Eline 8 years (cystinosis), Klaus 13 years, and Hanna 6 yearsKarmøy,Norway
Patrick Floodpatrick@floodp10.fsnet.co.uk Father of Zowiann,
Born 1995		Maesycoed, Pontypridd,
South Wales, U.K
Karen NorellKnor54@aol.com Friends of the FoundationHayward, Calif.
Allen & Debbie Beeleracb@wvi.com Parents of Lyndsey,
Born 1980		Salem, Oregon
Lyndsey Beelerllb@wvi.com Adult Cystinotic,
Born 1980		Salem, Oregon
Debbie & Miklos Adorjanprissyk@hotmail.com Parents of Devin,
(12 years old)		Toronto, Ont. Canada
Frederick Conard, MDfconard@home.com Physician and Father of
an adult patient		West Hartford, Connecticut
Marybeth KrummenackerMKRUMM@aol.com Mother of Brian born 1982 and
Laura (Cystinosis) Born 1986		 Hicksville, New York
Brian & Jessica RieschTriStarJR@hotmail.com Parents of Bailey
Born 1997		Fullerton, California
Cheryl Burnsckburns@ibm.net Mother of Paul Burns Born 1973
and Lindsay Burns Born 1976		Brampton, ON
Susan & Andy Maguireandy@emcee.ie Parents of
Sinead Born 1993(Cystinosis)
and Ciara Born 1997(Cystinosis)		Dublin, Ireland
Kelli Baumanjkbauman@mail.tds.net Mother of Karlee (Born 1991) Juda, WI.
Jennifer & Chase Poolesmity_smack@hotmail.com Michigan
Debra Hendricksonwolf@swva.net Mother of Kayla Albert
(Born 1988) 		Pembroke, Virginia
Margaret Prattmwpratt@sprint.ca Mother of Virginia
(Born 1962) 		Markham ONT, Canada
Jill & Brian MorrillTheMorrills@Home.com Parents of Megan (Born 1997)
Tyler (Born 1999) 		Grand Rapids, Michigan
Jessica Brittjbritt@uclink.berkeley.edu Adult Cystinotic (Born 1981)San Carlos, Ca.
Brian Smithbps@mac.com Adult Cystinotic (Born 1978)Costa Mesa, Ca.
David & Jane (Harrison) LemarJlemar243@yahoo.com Parents of Sarah (Born 1983)
and Katie (Born 1985) 		Vancouver, Washington
Dave Radcliffphylger@aol.com Father of Nichole (Born 1983)Auburn, Washington
Phil Morrisonphil.morrison@nextel.com Father of Kristy (13 yrs)
and Katie (Born 1991)		Memphis, Tn., Shelby
Serena Scottsweetblossom252@telstra.easymail.com.au Adult Cystinotic (Born 1982)York, Western Australia
Dawn & Jimmy Yearwoodyearwood1547@yahoo.com Parents Charles (Born 1990)
and Sam (Born 1993) and
Adam (Born 1995) with Cystinosis		lawrenceville, Ga.
Sara & Al Egglandegglands@lisco.net Parents of Carson
(Born 1983)		Pella, Iowa
Rose Kacoyannakiskacoy@ma.ultranet.com Adult Cystinotic (Born 1961)Framingham, MA
Joseph Kacoyannakiskacoy@ma.ultranet.com Adult Cystinotic (Born 1959)Framingham, MA
Janet Cummingsquilt4ever58@hotmail.com Sister to two cystinotic adults:
Rose & Joseph Kacoyannakis		Framingham, MA
Bonnie & Hillar PajuHPaju29079@aol.com Parents of Shannon (Born 1986)Anaheim, CA
Andrew & Elizabeth Macaulayeb_mac@yahoo.com Parents of Fraser (Born 1997)
with Cystinosis
and Rachael (Born 1999)		Victoria, Australia
Matthew Webbmdub667@aol.com Adult Cystinotic (Born 1979)Olympia, WA
Sue Scottsue56@telstra.easymail.com.au Mother of Serena (Born 1982)
with Cystinosis
& Melissa (Age 21) & Jeremy (Age 13)		York, Western Australia
Kelly PfeiferKel_Pfeifer@excite.com Adult Cystinotic (Born 1975) 2 sisters and 1 brotherSandy, Utah
Sarla Lallslall@gbgm-umc.org Parent of Zubin (Born 1983) with Cystinosis
& Shiraz (Born 1981)		Teaneck, New Jersey
Patricia Hagenplh1962@aol.com Parent of Melissa (Born 1994) with Cystinosis
& Kenton (Born 1986) &
Stephen (Born 1987)		Sebastian, Florida
Susan & James Newcombmicke@epix.net Parent of Alexander & Jeffery (Born 1995) with Cystinosis & James (Born 1986)
& Nicole (Born 1989)
& Matthew (Born 1990)		Joliett, Pennsylvania
Visser P.P.A.visser@zdh.nl Parent of Jorijn (Born 1977) with Cystinosis
& Roeland (Born 1990)		Amerongen, The Netherlands
Aud & Oyvind Rothoyvind.roth@rl.telia.no Grandparents of Andreas Roth (Born 1998)Stavanger, Norway
Anne Marie Laingkyleglins@netscapeonline.co.uk Mother of Sarah Louise (Born 1991)Sunderland, United Kingdom
Osnat & Shalom Pintospinto@netvision.net.il Parents of Noam (Born 1997)Haifa, Israel
Bonnie Smithbonsmith@pacbell.net Parent of Brian (Born 1978)Costa Mesa, California
Jenny Clarkebclarke1@tampabay.rr.com Parent of Annie Gunsaullus (Born 1981)Tampa, Florida
Susan & Peter Pennerpennerp@home.com Parents of Courtney (Born 1993)
& Charissa (Born 1995)		Hinton, Albert Canada
Joe Pfeiferjoep@urjet.net Parent of Kelly (Born 1975)Sandy, Utah
Leslie Ewingdaysfan73@hotmail.com Adult Cystinotic (Born 1973)Middletown, Ohio
Melvin Hanusemhanusesr@hotmail.com Parent of Victor (Born 1991) with Cystinosis & Mel Jr.
& Kalvin & Melanie 		Alert Bay British Columbia, Canada
Liz Hanuselizhanuse@hotmail.com Parent of Victor (Born 1991) with Cystinosis & Half Brother Mel Jr.
& Kalvin & Melanie 		Alert Bay British Columbia, Canada
Robert & Tara Leecheyenne24lee@aol.com Parents of Cheyenne Cooper (Born 1991)Grand Island, Nebraska
Angela & Marcellus DunbarADgirlieQ@aol.com Parents of Foster Son Taye (Born 1996)Palmetto, Florida
Paul & Stephanie Gillenberggillenberg@aol.com Parents of Kurt (Born 1992) and Clair (Born 1993)Canyon Country, California
Mrs. J. Gopaljgopal@msb.intnet.mu Parent of Yoginni (Born 1999)Coromandel, Mauritius
Joyce Brinkbetterbrick@home.com Parent of Bill & Dave (Born 1980)Independence, Kentucky
Linda & Mike Stonedstone96@aol.com Parents of Child (Born 1995)Loves Park, Illinois
Victor Santanavhsr@hotmail.com Secaucus, New Jersey
Jan & Marjolein Trompwww.m.vtromp@hetnet.nl Parents of Mark (Born 1987)
& Robin (Born 1993)		Amstelveen, The Netherlands
Matt Porterdarthmaul233@home.com Patient, Cousin to Laura KrummenackerAnkeny, Iowa
Bridgette Clarkbridgetteclark@hotmail.com Sister to David Clark (Born 1981)Toronto, Canada
Evan Monkmonk_wendy@hotmail.com Patient Born 1986 and siblings Bronwyn (23), Meghan (17), Ian (10), Taryn (5) Sarnia, Ontario, Canada
Tina Cogarcogarfam@mtec.net Parent to Lesley Cogar (Born 1992)
and Brittany (13)		Webster Springs, WV
Lanamissbell28@yahoo.com Patient Born 1972 and I am a 28 year old who has had a healthy baby boy that is now 5 years oldMarble Falls, Texas
Debbie ToweryDGTSMILE@aol.com Parent to Sophia (Born 1999)
and Ryan (Born 1991) and
Brent (Born 1997)		Manning, SC
Marta Nichole Sullivanwundrwoman692353@aol.com Parent to Michael Kimbrough (Born 1991)Santa Clara, Calif
Michael Kimbroughkewldood85758321@aol.com Patient Born 1991
Sister Kayla (Born 1994)
Brother Tommy (Born 1996)		Santa Clara, Calif
Todd Brayebtb@storm.ca Patient Born 1966Carleton Place,Ontario, Canada
Sarah Lancethemaven@shore.net Parent to Talor(Born 1991)Beverly, Massachusetts
Judy Gordonjgordon@tssa.org Parent to Lindsay Wells (Born 1978)Mississauga, Ontario, Canada

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