People in the database who are from USA

[Guest guest]

Hi

Here is a list of people who are in the part of the group

called “database”, who live in USA. There are nearly 800

members in our group. About 150 have chosen to put some

information about themselves in the section of the site called

“Database”.

I hope you find it useful … and feel encouraged to

add your name, and as little / most information about yourselves.

My guess is that if you see about 4 people in this list for your

state, it probably means that there are at least 10 people in the group

for your state (this is just an approximation).

Regards

Shireen Mohandes

London, England

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

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

Lorri

lcampagna3@...

Alturas

CA

2

1961

Female

4

when before age 12\, my daughter has had 2 before age 6

email

please

(he's my nephew)

rrippee77@...

San

Diego

CA

just

him

Nov.2004

none

as of yet (thank the lord!)

yes

rrippee77

Rylee

Nimtz

aimeenimtz@...

4575

Revillo Way \, San Diego

CA

Myself

2005/Female

Ptosis

surgery at 6 mo - childrens hospital

aimeenimtz

Adrienne

aallennn@...

Sacramento

CA

Son\,

Husband\, Father and Brother-in-law

son

(2007)\, husband (1963)

son

(none yet)\, husband (2)

yes

steph8208@...

CA

My

daughter only

2001

/ Female

Dr

Stuart Seiff UCSF Slings for ptosis/ wider opening

Yes

Kerry

fishingmom2@...

or mamajoex2@...

Riverside

CA

My

Daughter (considered new mutation) -- AnaLia

2000/Female

Possibly

summer of 2005

yes

How

reneehow@...

Palo

Alto

CA

Husband

(Dana)\, Son (Cameron)

1966/male\,

2004/male

4

surgeries in late 60's\, none

Yes

reneehow

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

Crystal

Berwick

cjberwick@...

Clearlake

CA

Son\,

Husband\, Father-law

2004\,

Male

Lacimal

duct\,YV Canthoplasty

YES

crytalskitle

Mieritz\, Malenah's Mom

Mieritz@...

2377

S. Summit Cir. Glen\, Escondido

CA

92026

Daughter

7/25/2003

little girl

none

so far

yes

Tawnya

Carvalho

CO

One

Female

None

Yes

mtcarvsophia

Eisele

Family - Jon\, April\, Mira\, Micah\, Misha

aprileisele@...

CO

Micah

2002/Male

1

surgery - YV canthoplasty and frontalis sling with silicone rods

Yes

aprileisele

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

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

Ball

maryberryprinces@...

ft

lauderdale

Fl

myself

and my son Charlie

mary1979

charlie2004

I

had operations but my son will start in october

yes

maryelisabethball

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

Debbie

westonfrom@...

Cleveland

GA

Daughter-Hannah

Sage

2000/female

frontal

slings at 9 weeks old

yes

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

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

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

a

J Crowley

pjc930@...

Middleboro

MA

I

have 5 kids\, 2 of them have BPES (nobody else)

daughter

2005\, son 1998

Ruth

jricard5@...

Billerica

MA

Ruth

is the first

2003/female

yes

jricard5

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

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

deb_barfoot@...

Raleigh

NC

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

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

Holmes

kimholmes2005@...

upstate

NY

1

my daughter McKenzie - no others confirmed

2005/Female

1st

to be done at age 1

Yes

/ from anywhere

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

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 !

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!!!!!!

Pam

O'Brien

obriengroup@...

9537

Cobblestone Drive\, Clarence

NY

14031

Home:

716 759 1734 Work: 716 759 1734

Aedan

Schoen - (Mom = )

Rainamint@...

New

York

NY

10011

Aedan

is our one and only

2002

Male

Ptosis

surgury at 10 weeks

YES

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

L. Logan

llogan2@...

Delta

OH

2

Myself and son Dylan (2001)

1970

/ Female

Yes

llogan21170

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

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

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

Oregon

Myself

1956

Female

Total

of 10 by age 10

Yes

Nina

asadoorian

nma420@...

PA

1

daughter

2002

/ Female

Zugel

jsb227@...

Sciota

PA

husband

and daughter

1969/2007

none/Nov.

2007

jsb227

Leindecker

Rozrabbit@...

Lenhartsville

PA

1-Daughter

1999

/ Female

Yes

Rozrabbit99@...

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

utkaters2000@...

Fort

Hood

Texas

Son\,

2007/Male

Ptosis

surgery (gortex sling) at 12 weeks

Yes

utkaters2000

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

Rob

Hall

rnhall180@...

Round

Rock

TX

myself\,

mom\, grand mother + 3 of her 4 sisters\, great grand father

1973/

male

none

yes

travisrobhall

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

hbarga@...

Dayton

OH

My

husband and Daughter

1984/

Female

My

husband had his eyes widened and muscle from his leg put in his eyes