USA members (in the Database section

[Guest guest]

Name Email Address & City State People in my family with BPES Year of birth / Gender Surgery information Would like to meet others in area My ID for Messenger

Eisele Family aprileisele@... Micah 2002/Male 1 surgery - YV canthoplasty and frontalis sling with silicone rods Yes aprileisele

Kim Beaver kbeaver@... Tuscumbia AL Husband, Daughter, and husband's two children from previous marriage Female two surgeries for Jordan yes kbeav94

Ginny Harper gharper05@... Heber Springs AR 1 daughter 1999 / Female 1st surgery at 3 1/2 yrs. (transnasal wiring) 2nd surgery at 5 yrs. lid suspension using fasia tissue harvested from her leg. No complications with either surgery. Yes

k9_cyclone@... Peoria AZ 3 1973 / Male I had my surgeries performed in Columbus Ohio by Dr. Burns begining in 1979. yes

steph8208@... CA My daughter only 2001 / Female Dr Stuart Seiff UCSF Slings for ptosis/ wider opening Yes

Rylee Nimtz aimeenimtz@... 4575 Revillo Way , San Diego CA Myself 2005/Female Ptosis surgery at 6 mo - childrens hospital aimeenimtz

Lorri lcampagna3@... Alturas CA 2 1961 Female 4 when before age 12, my daughter has had 2 before age 6 email please

Crystal Berwick cjberwick@... Clearlake CA Son, Husband, Father-law 2004, Male Lacimal duct,YV Canthoplasty YES crytalskitle

Kent W. Small, M.D. small@... Los Angeles CA none but currrently doing research on genetics of BPES, please contact me if you want to participate 1956 / Male yes

How reneehow@... Palo Alto CA Husband (Dana), Son (Cameron) 1966/male, 2004/male 4 surgeries in late 60's, none Yes reneehow

Kerry fishingmom2@... or mamajoex2@... Riverside CA My Daughter (considered new mutation) -- AnaLia 2000/Female Possibly summer of 2005 yes

Adrienne aallennn@... Sacramento CA Son, Husband, Father and Brother-in-law son (2007), husband (1963) son (none yet), husband (2) yes

(he's my nephew) rrippee77@... San Diego CA just him Nov.2004 none as of yet (thank the lord!) yes rrippee77

Mieritz, Malenah's Mom Mieritz@... 2377 S. Summit Cir. Glen, Escondido CA 92026 Daughter 7/25/2003 little girl none so far yes

carrieschroeder20@... CO 1- Daughter (Vana) 3/28/94 Female Many surgeries starting at one month old. Savannah has had canthoplasty's, blepharoplasty's, slings and many adjustments all with TREMENSOUS success, surgeries done by Dr. Thornton, San Texas. Absolutely carrieschroeder20@...

Tawnya Carvalho CO One Female None Yes mtcarvsophia

e Boyd jaimeelboyd@... CO mother, myself, daughter 1976/female silicone sling (age 2), replacement with leg muscle age 20 yes

Ann themamacatt@... Thornton CO 1 Daughter 8-3-07 Female Canthoplasty Would love to meet others! themamacatt@...

Scopp minsco72@... Milford CT my 4 yr old daughter 2001-female none as yet YES!

Tony Borrego t_borrego@... Washington DC Daughter 2006 Female None yet Yes T_Borrego

Moessner valganim@... 15639 Caloosa Creek Cir, Fort Myers FL Identical twin daughters 2007, female no surgeries yet yes valganim@...

Heidi heididembowski@... Clearwater FL husband Jeff, son #2 Jeff 1979, 2009 Jeff multiple surgeries in PA, none yet for but soon yes

Ball maryberryprinces@... ft lauderdale Fl myself and my son Charlie mary1979 charlie2004 I had operations but my son will start in october yes maryelisabethball

Klein karentots@... Melbourne FL None 1974/F 4 sure! karen_tots

Donna daiadarola@... North Lauderdale FL son - now 6 1/2 1999 - male 1st surgery in 2003, bilateral frontalis silicone slings. 2nd surgery scheduled 9/18/06 for either transnasal wiring or canthoplasty/canthoplexy yes none

Darryl Ytsefan@... Orlando FL 1-just me 12/18/03 male 1st surgery at 5 weeks, need adjustment done sometime in Oct. 2004 Yes 8ll

Robin nascar9118@... byron GA only 1 my son devin 1998 / Male Devin had three skin graphs surgeries at age 3 and 4yrs and he had slings at age 5yrs by Dr. Wojno in Atlanta, ga. yes robinlsmith4

Arlene Varela arlenevarela@... Canton GA Only Me 1974/Female I have had 4 reconstructive surgeries, the first at 1YO, the last at 14YO Yes! strangelene

Debbie westonfrom@... Cleveland GA Daughter-Hannah Sage 2000/female frontal slings at 9 weeks old yes

Brock McNatt mcnatt@... Ellijay GA 1 son 1999/male frontalis sling at 2months, again at 3y/o yes kim_mcnatt

Loverde Suwanee GA none 2003/ Female none yet Yes seloverde

Dana dlittle1851@... Des Moines IA Daughter 2002/Female Sling, Canthoplasty ABSOLUTELY!! brooklyn041502

Cheryl Vahl cheryl-vahl@... Iowa City IA , daughter 1983, female yes

Anne & Rob Weber anrweber@... 482 Cottage Avenue Glen Ellyn IL 2007 male none yet - scheduled for 10/07 yes

Snellback snellshein@... Wilmette IL only 2001 / Male Surgical VSD repair @ 4.5 months;canthoplasty/canthoplexy @ 3 years Sure! snellshein

Nicki Venable nicki.venable@... Fort Wayne IN Daughter Avery 2006 Female Temp. Slings at 3 months yes venables72

Cheryl Vahl (23 yr old daughter with BPES) cheryl-vahl@... 56 Arbury Dr, Iowa City IO (23 yr old daughter with BPES) F I'd like to meet others if there is a get-together in the US.

Hannah Rae angie_huffman@... Shepherdsville KY Father-Jon 2004/Female None yet YES

Ruth jricard5@... Billerica MA Ruth is the first 2003/female yes jricard5

Murray michelle888_99@... Mansfield MA Myself, eldest sister and father 1979 / female 3 surgeries, last one at age 13 YES!!!!!! michelle888_99

a J Crowley pjc930@... Middleboro MA I have 5 kids, 2 of them have BPES (nobody else) daughter 2005, son 1998

April @... odenton MD myself 1979 / Female two when i was very young (under 3) Yes

boydgi@... MI 2, myself and my father, which I have never met. Possibly more 1963, female ages: 5, 17, 19. Last two surgeries performed @ U of Michigan 20+ years ago yes mcauley9822000

McManus juliecheese99@... Midland MI just me 1983 / female at ages 2 1/2 and 6 sure cheese is my AIM name

Charlotte Nordstrom nordstrom@... Minneapolis MN son, daughter, sister, father, grandfather, great-grandmother 1964/F sling and epicanthal surgeries at 6 and 8 years; son Nils had sling surgeries at 6 months and 5 years, daughter Ebba at 7 months yes

Nancie N_Cottrill@... Kansas City MO Daughter (2007) and Husband (1985) 2007/F and 1985/M None Absolutely N_Cottrill@...

Kathy (for ) ka5than@... St. MO daughter, her father,two aunts, two uncles, three girl cousins, two boy cousins, two great aunts, two great uncles, grandfather, great grandfather, 1985 Double z plasty age 10 months, eyelid lift 14 months z942271

Conner goozle71@... St. Louis MO just me 2002/ male none yes

Melisa Harp MyHonebee@aol 1377 Montague Road, Highlandville MO 65669 24 year old son and his father 1981-male, 1956-male my son had 2 surgeries at 4 and 6 months old, one to clip the inner and outer edges of eye openings and the second one to suture his eye lids open. He also had surgeries to try and correct strabismus at the age of 2 but still has a lazy eye, identical to his fathers. Would be interested in communicating with others in area. MyHoneBee

Lily lily_bogle@... NC Father, 2 sisters (one with POF), 1 nephew Yes

Harvey happyappykd@... Charlotte NC Myself and my daughter Paige 2 surgeries for me, none yet for my daughter sure

on c.jameson@... NH My daugther Hannah she is 12 1994 female She had her first surgery when she was 14 months old yes chrissyj30

Debra Yusko Fehl debrayusko@... 36 Conerly Rd., Somerset NJ My son only 2004/Boy last one was 12/08; tendon ptosis lift/trans nasal wire in 2006 Yes

DAWN KORBINTAI2LUV@... LAS VEGAS NV MY DAUGTHER 2-26-03 3 SURGERIES TO DATE YES WOULD LOVE TO~ TAILYNN03

Dalia daliaben@... Great Neck NY Me [my 2 brothers, dad, 2 aunts, grandfather and his sister, and great grandfather who was the first to exhibit this gene.) 1979 Female When I was around 20ish, I had 2 surgeries. The first was to open the inner eyelid (blepharophimosis). The second was to lift the eyelid (ptosis). I never did the 3rd surgery which was for the lower lid, which i thought was unnessary. Yes Not available, please email me - Thank you!

Sharon Ancilleri Besilly12000@... Holtsville NY Granfather,Sister, Father, 2 Sons, 1 Dauther KIDS: 1991, 1994, 2005 email me ...it is many ...all 3 kids have had several YES!!!!!!

Sharon Besilly12000@... Holtsville, NY Grandpa, Husband, 2 sons, 1 daughter m 1991, m 1994, f 6/6/05 would love to meet others...give me a shout !

Holmes kimholmes2005@... upstate NY McKenzie DOB 6/24/05 - no others confirmed 2005/Female slings+lid crease done @ 1 yr. NOW LOOKING FOR A DOC 2 DO THE YZ SURGERY! Yes / from anywhere

Aedan Schoen - (Mom = ) Rainamint@... New York NY 10011 Aedan is our one and only 2002 Male Ptosis surgury at 10 weeks YES

Pam O'Brien obriengroup@... 9537 Cobblestone Drive, Clarence NY 14031 Home: 716 759 1734 Work: 716 759 1734

mfeichtner@... OH 8+ 1971 / Female I had 2 surgeries as a child. One in 1975 & one in 1976. They were both done by Dr. Jansen in Cincinnati, Ohio. My oldest son had 2 surgeries both performed by Dr. Kulwin at the Cincinnat Eye Institute. My youngest has had a total of 3 surgeries as of this date. He had a temporary suture sling done in 1998 when he was 4 months old. In 2001 he another sling surgery done. August of 2003 he had the epicanthal surgery all of which were done by Dr.Kulwin. Yes don't have Mess. AOL ID is MRF871

Amberik tlynnk69@... Cleveland OH Dad, Brother, Sister, and Myself 1977 I have had 5 surgeries on my eyes 4 of them were when i was very young.... The 5th was when i was 14.... I think the doctor did a wonderful job. Dr. Levine who still specializes in BPES surgeries in the Cleveland area. Yes

Michele shellv@... Dayton OH only myself 1969/F 2 surguries, one in 1974 and one in1975. Dr. Burns, Columbus Ohio. Still practicing there. He used muscle for my eyes from a tissue donor.Should have had one more surgury as a teen, but never went back to recently, because my right eye is weakening. yes

hbarga@... Dayton OH My husband and Daughter 1984/ Female My husband had his eyes widened and muscle from his leg put in his eyes

L. Logan llogan2@... Delta OH 2 Myself and son Dylan (2001) 1970 / Female Yes llogan21170

Rae Ann moesgirl35@... 3612 Allview Circle, Cincinnati OH 45238 Son, 2004, boy Sling surgery Feb 2004 yes Work phone: 513-502-0102

Dannah danabanana16@... Portland OR Myself 1956 Female Total of 10 by age 10 Yes

Nina asadoorian nma420@... PA 1 daughter 2002 / Female

Leindecker Rozrabbit@... Lenhartsville PA 1-Daughter 1999 / Female Yes Rozrabbit99@...

Zugel jsb227@... Sciota PA husband and daughter 1969/2007 none/Nov. 2007 jsb227

Amy Hinchman mamahinch@... West Mifflin PA My daughter 2004/F none yes mamahinch@...

Donna donnahaskins@... RI daughter 1994 / female YV canthoplasty procedure at age 3, fascia lata frontal sling procedure at age 4. Both surgeries perfomed by Dr. R. Hofmann of Rhode Island Eye Institute yes

Lynette Fong wdw43@... SC several male relatives and sister 1972/female 1 major 2 minor as 4-6 yr old yes wdwlvr94

hjwilga5@... Chattanooga TN Daughter 1993 ; Female Has had 3 surgeries thus far. Yes

Amy Bradshaw amybrms@... Newport TN My daughter , she is the first 2005/Female lid lift 1-13-06 yes

dhhughes@... 3604 Hendrick Dr, Plano TX home phone: 972-943-0588; work phone 972-943-0588

Barfoot deb_barfoot@... Dallas TX just 2003 / Male Fairfax, VA Dr. Parelhoff - 1st frontalis suspension @3mos old, 2nd @8 mos old (due to growth and loss of sling tension), Dr. Buckley, Duke University Ped. Eye Center - 3rd @ 2.8 y.o. to clean up infection of sling in right eyebrow and lid, 4th @ 3 y.o. to clean up infection of sling in left eyebrow and lid yes

utkaters2000@... Fort Hood TX Son, 2007/Male Ptosis surgery (gortex sling) at 12 weeks Yes utkaters2000

Rob Hall rnhall180@... Round Rock TX myself, mom, grand mother + 3 of her 4 sisters, great grand father 1973/ male none yes travisrobhall

Hayley hdesbien@... San TX Husband, 5 year old daughter, Allie, and 16 week old daughter, Carson 1981/F None yet Yes

Beth Gordon bethgordon03@... Purcellville VA my infant daughter, my father, my grandfather and me 1970/female, 2004/female I had ptosis & epicanthus surgeries between 1971-1974, my daughter has slings at this time, Children's Hospital, DC yes

Loretta son annaloretta17692@... WA 3 1955 I am female.......1 sister has BPES & Father deceased had BPES Eye Foundation Hospital 1720 8th Ave. Birminham Alabama 'Alston Callahan' in the 1960s yes I dont have one

Harry dawn@... Maple Valley WA is the first 1998/female 1st- age 4: canthopexies to increase the horizontal width and attach inner and outer corners to bones; 2nd at age 5: frontalis sling for ptosis and second attempt to attach outer corners; 3rd at age 5: skin graft to add more skin to the lower lids; 4th at age 6: revision of skin graft scar line; re-do right eye frontalis sling Yes!

Mulvaney chatthisway Rochester WA Kennth Mulvaney 99/male none yes chatthisway

Mason bnbbrethouwer@... Madison WI only one 1999/Male 2 surgeries: slings at 10 weeks old (Aug. 1999) and transnasal wiring at age 4 1/2 yrs.(Feb. 2004) A third surgery is scheduled to redo slings this summer (age 5.) definitely bnbbrethouwer@...

Terry A. Helgestad terryahelge@... 726 W. Ladd Lane, Edgerton WI 53534