RE: USA members (in the Database section

[Guest guest]

Shireen,

We are not listed. Maybe I need to update?

Please advise.

Thanks so much!

Beth ('s Mom) 3-12-03

From: Shireen Mohandes <shireen@...>blepharophimosis Sent: Fri, August 6, 2010 6:25:36 AMSubject: blepharophimosis USA members (in the "Database" section

Sorry – last time I posted this it didn’t come out right

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

kbeavercomcast (DOT) net

Tuscumbia

AL

Husband, Daughter, and husband's two children from previous marriage

Female

two surgeries for Jordan

yes

kbeav94

Ginny Harper

gharper05 (DOT) com

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 (DOT) com

Peoria

AZ

3

1973 / Male

I had my surgeries performed in Columbus Ohio by Dr. Burns begining in 1979.

yes

steph8208 (DOT) com

CA

My daughter only

2001 / Female

Dr Stuart Seiff UCSF Slings for ptosis/ wider opening

Yes

Rylee Nimtz

aimeenimtz (DOT) com

4575 Revillo Way , San Diego

CA

Myself

2005/Female

Ptosis surgery at 6 mo - childrens hospital

aimeenimtz

Lorri

lcampagna3 (DOT) com

Alturas

CA

2

1961 Female

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

email please

Crystal Berwick

cjberwicknetzero (DOT) com

Clearlake

CA

Son, Husband, Father-law

2004, Male

Lacimal duct,YV Canthoplasty

YES

crytalskitle

Kent W. Small, M.D.

small@.... edu

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 (DOT) com

Palo Alto

CA

Husband (Dana), Son (Cameron)

1966/male, 2004/male

4 surgeries in late 60's, none

Yes

reneehow

Kerry

fishingmom2@ hotmail.com or mamajoex2 (DOT) com

Riverside

CA

My Daughter (considered new mutation) -- AnaLia

2000/Female

Possibly summer of 2005

yes

Adrienne

aallennn (DOT) com

Sacramento

CA

Son, Husband, Father and Brother-in-law

son (2007), husband (1963)

son (none yet), husband (2)

yes

(he's my nephew)

rrippee77 (DOT) com

San Diego

CA

just him

Nov.2004

none as of yet (thank the lord!)

yes

rrippee77

Mieritz, Malenah's Mom

Mieritzjuno (DOT) com

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

minsco72sbcglobal (DOT) net

Milford

CT

my 4 yr old daughter

2001-female

none as yet

YES!

Tony Borrego

t_borrego (DOT) com

Washington

DC

Daughter

2006 Female

None yet

Yes

T_Borrego

Moessner

valganimmsn (DOT) com

15639 Caloosa Creek Cir, Fort Myers

FL

Identical twin daughters

2007, female

no surgeries yet

yes

valganim (DOT) com

Heidi

heididembowski

Clearwater

FL

husband Jeff, son #2

Jeff 1979, 2009

Jeff multiple surgeries in PA, none yet for but soon

yes

Ball

maryberryprinces@ aol.com

ft lauderdale

Fl

myself and my son Charlie

mary1979 charlie2004

I had operations but my son will start in october

yes

maryelisabethball

Klein

karentotsaol (DOT) com

Melbourne

FL

None

1974/F

4

sure!

karen_tots

Donna

daiadarola@bellsout h.net

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

Ytsefanaol (DOT) com

Orlando

FL

1-just me

12/18/03 male

1st surgery at 5 weeks, need adjustment done sometime in Oct. 2004

Yes

8ll

Robin

nascar9118aol (DOT) com

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@ msn.com

Canton

GA

Only Me

1974/Female

I have had 4 reconstructive surgeries, the first at 1YO, the last at 14YO

Yes!

strangelene

Debbie

westonfrom (DOT) com

Cleveland

GA

Daughter-Hannah Sage

2000/female

frontal slings at 9 weeks old

yes

Brock McNatt

mcnattellijay (DOT) com

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@ msn.com

Des Moines

IA

Daughter

2002/Female

Sling, Canthoplasty

ABSOLUTELY!!

brooklyn041502

Cheryl Vahl

cheryl-vahl@ uiowa.edu

Iowa City

IA

, daughter

1983, female

yes

Anne & Rob Weber

anrweber (DOT) com

482 Cottage Avenue Glen Ellyn

IL

2007 male

none yet - scheduled for 10/07

yes

Snellback

snellsheinaol (DOT) com

Wilmette

IL

only

2001 / Male

Surgical VSD repair @ 4.5 months;canthoplasty /canthoplexy @ 3 years

Sure!

snellshein

Nicki Venable

nicki.venable@ co.allen. in.us

Fort Wayne

IN

Daughter Avery

2006 Female

Temp. Slings at 3 months

yes

venables72

Cheryl Vahl (23 yr old daughter with BPES)

cheryl-vahl@ uiowa.edu

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 (DOT) com

Billerica

MA

Ruth is the first

2003/female

yes

jricard5

Murray

michelle888_ 99 (DOT) com

Mansfield

MA

Myself, eldest sister and father

1979 / female

3 surgeries, last one at age 13

YES!!!!!!

michelle888_ 99

a J Crowley

pjc930comcast (DOT) net

Middleboro

MA

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

daughter 2005, son 1998

April

nomeat (DOT) org

odenton

MD

myself

1979 / Female

two when i was very young (under 3)

Yes

boydgi@trinity- health.org

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

nordstromaol (DOT) com

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 (DOT) com

Kansas City

MO

Daughter (2007) and Husband (1985)

2007/F and 1985/M

None

Absolutely

N_Cottrill (DOT) com

Kathy (for )

ka5thanaol (DOT) com

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 (DOT) com

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_boglesil (DOT) org

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.jamesonverizon (DOT) net

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 (DOT) com

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@ AOL.COM

LAS VEGAS

NV

MY DAUGTHER

2-26-03

3 SURGERIES TO DATE

YES WOULD LOVE TO~

TAILYNN03

Dalia

daliabenhotmail (DOT) com

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 = )

Rainamintaol (DOT) com

New York

NY 10011

Aedan is our one and only

2002 Male

Ptosis surgury at 10 weeks

YES

Pam O'Brien

obriengroup@ aol.com

9537 Cobblestone Drive, Clarence

NY 14031

Home: 716 759 1734 Work: 716 759 1734

mfeichtnercinci (DOT) rr.com

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 (DOT) com

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@.... com

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

hbargajuno (DOT) com

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

llogan2hotmail (DOT) com

Delta

OH

2 Myself and son Dylan (2001)

1970 / Female

Yes

llogan21170

Rae Ann

moesgirl35aol (DOT) com

3612 Allview Circle, Cincinnati

OH 45238

Son,

2004, boy

Sling surgery Feb 2004

yes

Work phone: 513-502-0102

Dannah

danabanana16@ comcast.net

Portland

OR

Myself

1956 Female

Total of 10 by age 10

Yes

Nina asadoorian

nma420comcast (DOT) net

PA

1 daughter

2002 / Female

Leindecker

Rozrabbitcs (DOT) com

Lenhartsville

PA

1-Daughter

1999 / Female

Yes

Rozrabbit99

Zugel

jsb227@...

Sciota

PA

husband and daughter

1969/2007

none/Nov. 2007

jsb227

Amy Hinchman

mamahinch (DOT) com

West Mifflin

PA

My daughter

2004/F

none

yes

mamahinch (DOT) com

Donna

donnahaskins@ cox.net

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

wdw43comporium (DOT) net

SC

several male relatives and sister

1972/female

1 major 2 minor as 4-6 yr old

yes

wdwlvr94

hjwilga5hotmail (DOT) com

Chattanooga

TN

Daughter

1993 ; Female

Has had 3 surgeries thus far.

Yes

Amy Bradshaw

amybrms (DOT) com

Newport

TN

My daughter , she is the first

2005/Female

lid lift 1-13-06

yes

dhhughes@globalheal thnetwork. org

3604 Hendrick Dr, Plano

TX

home phone: 972-943-0588; work phone 972-943-0588

Barfoot

deb_barfoot@ hotmail.com

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@sbcglobal .net

Round Rock

TX

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

1973/ male

none

yes

travisrobhall

Hayley

hdesbienhotmail (DOT) com

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@reading- connections. com

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

[Guest guest]

Hi Beth

This database is a voluntary

database – you put as little or as much information as you like.

Visit the site here:

blepharophimosis/database

Click on “BPES Listâ€

Then click on “Add Recordâ€Â  …it

is on the right of the screen, about an inch above “surgery information†column

heading.

Let me know if you need any

further help.

It is hugely useful to have all

this information – especially for newcomers, because they can easily scan down

a list and get an overall idea of our type of members, ages, geographical

location.

Take care, Shireen

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of Beth Mullane

Sent: 09 August 2010 17:09

blepharophimosis

Subject: Re: blepharophimosis USA members (in the " Database "

section

Shireen,

We

are not listed. Maybe I need to update?

Please

advise.

Thanks

so much!

Beth

('s Mom) 3-12-03

From: Shireen Mohandes

<shireen@...>

blepharophimosis

Sent: Fri, August 6, 2010 6:25:36 AM

Subject: blepharophimosis USA members (in the " Database "

section

Sorry

– last time I posted this it didn’t come out right

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

kbeavercomcast (DOT)

net

Tuscumbia

AL

Husband,

Daughter, and husband's two children from previous marriage

Female

two

surgeries for Jordan

yes

kbeav94

Ginny

Harper

gharper05 (DOT)

com

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 (DOT)

com

Peoria

AZ

3

1973

/ Male

I

had my surgeries performed in Columbus Ohio by Dr. Burns begining in

1979.

yes

steph8208 (DOT)

com

CA

My

daughter only

2001

/ Female

Dr

Stuart Seiff UCSF Slings for ptosis/ wider opening

Yes

Rylee

Nimtz

aimeenimtz (DOT)

com

4575

Revillo Way , San Diego

CA

Myself

2005/Female

Ptosis

surgery at 6 mo - childrens hospital

aimeenimtz

Lorri

lcampagna3 (DOT)

com

Alturas

CA

2

1961

Female

4

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

email

please

Crystal

Berwick

cjberwicknetzero (DOT)

com

Clearlake

CA

Son,

Husband, Father-law

2004,

Male

Lacimal

duct,YV Canthoplasty

YES

crytalskitle

Kent

W. Small, M.D.

small@....

edu

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 (DOT)

com

Palo

Alto

CA

Husband

(Dana), Son (Cameron)

1966/male,

2004/male

4

surgeries in late 60's, none

Yes

reneehow

Kerry

fishingmom2@

hotmail.com or mamajoex2 (DOT) com

Riverside

CA

My

Daughter (considered new mutation) -- AnaLia

2000/Female

Possibly

summer of 2005

yes

Adrienne

aallennn (DOT)

com

Sacramento

CA

Son,

Husband, Father and Brother-in-law

son

(2007), husband (1963)

son

(none yet), husband (2)

yes

(he's my nephew)

rrippee77 (DOT)

com

San

Diego

CA

just

him

Nov.2004

none

as of yet (thank the lord!)

yes

rrippee77

Mieritz, Malenah's Mom

Mieritzjuno (DOT)

com

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

minsco72sbcglobal (DOT)

net

Milford

CT

my

4 yr old daughter

2001-female

none

as yet

YES!

Tony

Borrego

t_borrego (DOT)

com

Washington

DC

Daughter

2006

Female

None

yet

Yes

T_Borrego

Moessner

valganimmsn (DOT)

com

15639

Caloosa Creek Cir, Fort Myers

FL

Identical

twin daughters

2007,

female

no

surgeries yet

yes

valganim (DOT)

com

Heidi

heididembowski@

Clearwater

FL

husband

Jeff, son #2

Jeff

1979, 2009

Jeff

multiple surgeries in PA, none yet for but soon

yes

Ball

maryberryprinces@

aol.com

ft

lauderdale

Fl

myself

and my son Charlie

mary1979

charlie2004

I

had operations but my son will start in october

yes

maryelisabethball

Klein

karentotsaol (DOT)

com

Melbourne

FL

None

1974/F

4

sure!

karen_tots

Donna

daiadarola@bellsout

h.net

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

Ytsefanaol (DOT)

com

Orlando

FL

1-just

me

12/18/03

male

1st

surgery at 5 weeks, need adjustment done sometime in Oct. 2004

Yes

8ll

Robin

nascar9118aol (DOT)

com

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@

msn.com

Canton

GA

Only

Me

1974/Female

I

have had 4 reconstructive surgeries, the first at 1YO, the last at 14YO

Yes!

strangelene

Debbie

westonfrom (DOT)

com

Cleveland

GA

Daughter-Hannah

Sage

2000/female

frontal

slings at 9 weeks old

yes

Brock

McNatt

mcnattellijay (DOT)

com

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@

msn.com

Des

Moines

IA

Daughter

2002/Female

Sling,

Canthoplasty

ABSOLUTELY!!

brooklyn041502

Cheryl

Vahl

cheryl-vahl@

uiowa.edu

Iowa

City

IA

,

daughter

1983,

female

yes

Anne

& Rob Weber

anrweber (DOT)

com

482

Cottage Avenue Glen Ellyn

IL

2007

male

none

yet - scheduled for 10/07

yes

Snellback

snellsheinaol (DOT)

com

Wilmette

IL

only

2001

/ Male

Surgical

VSD repair @ 4.5 months;canthoplasty /canthoplexy @ 3 years

Sure!

snellshein

Nicki

Venable

nicki.venable@

co.allen. in.us

Fort

Wayne

IN

Daughter

Avery

2006

Female

Temp.

Slings at 3 months

yes

venables72

Cheryl

Vahl (23 yr old daughter with BPES)

cheryl-vahl@

uiowa.edu

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 (DOT)

com

Billerica

MA

Ruth

is the first

2003/female

yes

jricard5

Murray

michelle888_

99 (DOT) com

Mansfield

MA

Myself,

eldest sister and father

1979

/ female

3

surgeries, last one at age 13

YES!!!!!!

michelle888_

99

a

J Crowley

pjc930comcast (DOT)

net

Middleboro

MA

I

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

daughter

2005, son 1998

April

nomeat (DOT)

org

odenton

MD

myself

1979

/ Female

two

when i was very young (under 3)

Yes

boydgi@trinity-

health.org

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

nordstromaol (DOT)

com

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 (DOT)

com

Kansas

City

MO

Daughter

(2007) and Husband (1985)

2007/F

and 1985/M

None

Absolutely

N_Cottrill (DOT)

com

Kathy

(for )

ka5thanaol (DOT)

com

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 (DOT)

com

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_boglesil (DOT)

org

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.jamesonverizon (DOT)

net

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 (DOT)

com

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@

AOL.COM

LAS

VEGAS

NV

MY

DAUGTHER

2-26-03

3

SURGERIES TO DATE

YES

WOULD LOVE TO~

TAILYNN03

Dalia

daliabenhotmail (DOT)

com

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 = )

Rainamintaol (DOT)

com

New

York

NY

10011

Aedan

is our one and only

2002

Male

Ptosis

surgury at 10 weeks

YES

Pam

O'Brien

obriengroup@

aol.com

9537

Cobblestone Drive, Clarence

NY

14031

Home:

716 759 1734 Work: 716 759 1734

mfeichtnercinci (DOT)

rr.com

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 (DOT)

com

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@....

com

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

hbargajuno (DOT)

com

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

llogan2hotmail (DOT)

com

Delta

OH

2

Myself and son Dylan (2001)

1970

/ Female

Yes

llogan21170

Rae

Ann

moesgirl35aol (DOT)

com

3612

Allview Circle, Cincinnati

OH

45238

Son,

2004,

boy

Sling

surgery Feb 2004

yes

Work

phone: 513-502-0102

Dannah

danabanana16@

comcast.net

Portland

OR

Myself

1956

Female

Total

of 10 by age 10

Yes

Nina

asadoorian

nma420comcast (DOT)

net

PA

1

daughter

2002

/ Female

Leindecker

Rozrabbitcs (DOT)

com

Lenhartsville

PA

1-Daughter

1999

/ Female

Yes

Rozrabbit99@

Zugel

jsb227@...

Sciota

PA

husband

and daughter

1969/2007

none/Nov.

2007

jsb227

Amy

Hinchman

mamahinch (DOT)

com

West

Mifflin

PA

My

daughter

2004/F

none

yes

mamahinch (DOT)

com

Donna

donnahaskins@

cox.net

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

wdw43comporium (DOT)

net

SC

several

male relatives and sister

1972/female

1

major 2 minor as 4-6 yr old

yes

wdwlvr94

hjwilga5hotmail (DOT)

com

Chattanooga

TN

Daughter

1993

; Female

Has

had 3 surgeries thus far.

Yes

Amy

Bradshaw

amybrms (DOT)

com

Newport

TN

My

daughter , she is the first

2005/Female

lid

lift 1-13-06

yes

dhhughes@globalheal

thnetwork. org

3604

Hendrick Dr, Plano

TX

home

phone: 972-943-0588; work phone 972-943-0588

Barfoot

deb_barfoot@

hotmail.com

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@sbcglobal

..net

Round

Rock

TX

myself,

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

1973/

male

none

yes

travisrobhall

Hayley

hdesbienhotmail (DOT)

com

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@reading-

connections. com

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