RE: Members in the USA (according to our Database)

[Guest guest]

Hi USA people

I had missed off a few people whilst trying to transpose the records in the database.

Here is the revised list.

Sorry about that

Shireen

Kim Beaver

kbeaver@...

Tuscumbia

Alabama

USA

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

Female

two surgeries for Jordan

Ginny Harper

gharper05@...

Heber Springs

AR

USA

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.

Noonnaanay@...

CA

USA

My daughter only

2001 / Female

Dr Stuart Seiff UCSF Slings for ptosis

Kerry

fishingmom2@... or mamajoex2@...

Riverside

CA

USA

My Daughter (considered new mutation) -- AnaLia

2000/Female

Possibly summer of 2005

How

reneehow@...

Palo Alto

CA

USA

Husband (Dana), Son (Cameron)

1966/male, 2004/male

4 surgeries in late 60's, none

Kent W. Small, M.D.

small@...

Los Angeles

CA

USA

none but currrently doing research on genetics of BPES, please contact me if you want to participate

1956 / Male

Crystal Berwick

cjberwick@...

Clearlake

CA

USA

Son, Husband, Father-law

2004, Male

Lacimal duct,YV Canthoplasty

Mieritz, Malenah's Mom

Mieritz@...

escondido

Ca

usa

Daughter

7/25/2003 little girl

none so far

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

aprileisele@...

Colorado

USA

Micah

2002/Male

1 surgery - YV canthoplasty and frontalis sling with silicone rods

Scopp

minsco72@...

Milford

CT

USA

my 4 yr old daughter

2001-female

none as yet

Darryl

Ytsefan@...

Orlando

FL

USA

1-just me

12/18/03 male

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

Ball

maryberryprinces@...

ft lauderdale

Fl

usa

myself and my son Charlie

mary1979 charlie2004

I had operations but my son will start in october

Robin

nascar9118@...

byron

GA

USA

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.

Arlene Varela

arlenevarela@...

Canton

GA

USA

Only Me

1974/Female

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

Brock McNatt

mcnatt@...

Ellijay

GA

USA

1 son

1999/male

frontalis sling at 2months, again at 3y/o

Loverde

Suwanee

GA

USA

none

2003/ Female

none yet

Snellback

snellshein@...

Wilmette

IL

USA

only

2001 / Male

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

Hannah Rae

angie_huffman@...

Shepherdsville

Kentucky

USA

Father-Jon

2004/Female

None yet

Ruth

jricard5@...

Billerica

MA

USA

Ruth is the first

2003/female

April

@...

odenton

MD

USA

myself

1979 / Female

two when i was very young (under 3)

boydgi@...

MI

USA

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

McManus

juliecheese99@...

Midland

MI

USA

just me

1983 / female

at ages 2 1/2 and 6

Conner

goozle71@...

St. Louis

MO

USA

just me

2002/ male

none

deb_barfoot@...

Raleigh

NC

USA

just

2003 / Male

1st frontalis suspension @3mos old, 2nd @8 mos old

Lily

lily_bogle@...

NC

USA

Father, 2 sisters (one with POF), 1 nephew

DAWN

KORBINTAI2LUV@...

LAS VEGAS

NEVADA

USA

MY DAUGTHER

2-26-03

3 SURGERIES TO DATE

Aedan Schoen -

Rainamint@...

New York

New York

USA

Aedan is our one and only

2002 Male

Ptosis surgury at 10 weeks

Sharon

Besilly12000@...

Holtsville,

New York

USA

Grandpa, Husband, 2 sons, 1 daughter

m 1991, m 1994, f 6/6/05

Sharon Ancilleri

Besilly12000@...

Holtsville

New York

USA

Granfather,Sister, Father, 2 Sons, 1 Dauther

KIDS: 1991, 1994, 2005

email me ...it is many ...all 3 kids have had several

Dalia

daliaben@...

Great Neck

NY

USA

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.

L. Logan

llogan2@...

Delta

OH

USA

2 Myself and son Dylan (2001)

1970 / Female

Michele

shell3238@...

Fairborn

OH

USA

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.

mfeichtner@...

OH

USA

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.

Rae Ann

moesgirl35@...

Cincinnati

Ohio

USA

Son,

2004, boy

Sling surgery Feb 2004

Nina asadoorian

nma420@...

PA

USA

1 daughter

2002 / Female

Leindecker

Rozrabbit@...

Lenhartsville

PA

USA

1-Daughter

1999 / Female

Amy Hinchman

mamahinch@...

West Mifflin

PA

USA

My daughter

2004/F

none

Rob Hall

rnhall180@...

Round Rock

TX

USA

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

1973/ male

none

Beth Gordon

bethgordon03@...

Purcellville

VA

USA

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

Loretta son

annaloretta17692@...

WA

USA

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 1960's

Harry

dawn@...

Maple Valley

WA

USA

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

Mulvaney

chatthisway

Rochester

Washington

USA

Kennth Mulvaney

99/male

none

Mason

bnbbrethouwer@...

Madison

WI

USA

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.)

> Re: blepharophimosis Members in the USA (according> to our Database)>> Hi Shireen,> I have us in the database but our info doesn't appear on the> list below. Any ideas?? > Thanks,> April>> --- Andy Bowles & Shireen Mohandes> <andy.bowles@...> wrote:>> > Hi> > > > I know that people in the USA are thinking about and arranging get> > togethers.> > According to our database, the list of people with BPES and their> > location is below.> > Please remember that if you want your name added to this list, and> > you'd like to provide the information about relatives and> treatment,> > then this is something you have to do yourself. It is very> easy to do,> > but if you want help then just contact me.> > Regards> > Shireen> > PS - if this does not come out clearly on your email, then> just let me> > know and I will send it to you directly in another format.> > > > > > > >> > Kim Beaver> >> > kbeaver@...> >> > Tuscumbia> >> > Alabama> >> > USA> >> >> > Ginny Harper> >> > gharper05@...> >> > Heber Springs> >> > AR> >> > USA> >> >> > Crystal Berwick> >> > cjberwick@...> >> > Clearlake> >> > CA> >> > USA> >> >> > Kerry> >> > fishingmom2@... or mamajoex2@...> >> > Riverside> >> > CA> >> > USA> >> >> > How> >> > reneehow@...> >> > Palo Alto> >> > CA> >> > USA> >> >> > > >> > Noonnaanay@...> >> > > >> > CA> >> > USA> >> >> > Scopp> >> > minsco72@...> >> > Milford> >> > CT> >> > USA> >> >> > Darryl> >> > Ytsefan@...> >> > Orlando> >> > FL> >> > USA> >> >> > Ball> >> > maryberryprinces@...> >> > ft lauderdale> >> > Fl> >> > usa> >> >> > Loverde> >> > > >> > Suwanee> >> > GA> >> > USA> >> >> > Arlene Varela> >> > arlenevarela@...> >> > Canton> >> > GA> >> > USA> >> >> > Brock McNatt> >> > mcnatt@...> >> > Ellijay> >> > GA> >> > USA> >> >> > Robin > >> > nascar9118@...> >> > byron> >> > GA> >> > USA> >> >> > Snellback> >> > snellshein@...> >> > Wilmette> >> > IL> >> > USA> >> >> > Hannah Rae> >> > angie_huffman@...> >> > Shepherdsville> >> > Kentucky> >> > USA> >> >> > Ruth> >> > jricard5@...> >> > Billerica> >> > MA> >> > USA> >> >> >> === message truncated ===>>> __________________________________________________>