RE: Childrens Hospital of Philadelphia

[Guest guest]

Judy,

Contact Holloran who is on this list. Her e-mail is

_Kannew@..._ (mailto:Kannew@...) . Her son Timmy has gone there if

I remember

right. She's a wealth of info for all and is about as kind as a person can

get.

Bonnie

[Guest guest]

Judy,

Contact Holloran who is on this list. Her e-mail is

_Kannew@..._ (mailto:Kannew@...) . Her son Timmy has gone there if

I remember

right. She's a wealth of info for all and is about as kind as a person can

get.

Bonnie

[Guest guest]

Judy,

Contact Holloran who is on this list. Her e-mail is

_Kannew@..._ (mailto:Kannew@...) . Her son Timmy has gone there if

I remember

right. She's a wealth of info for all and is about as kind as a person can

get.

Bonnie

[Guest guest]

Hi Judy,

My name is Murray and I live in New Jersey and use a few doctors at

CHOP that I am pleased with. I have identical twins with CHARGE that are 9

years old...we have been dealing with CHOP most of their lives. (Don't quote me

on the spelling of names)

Dr Zackai is the genetic doctor that started with us. Dr Zackai has

consultants that work with her and they are the ones that helped us get

organized

with the sub specialty doctors...

ENT-Dr Shah

Audiology-Fran Batson

Endocrinology-Dr. Lorraine Katz

GI-Dr.Mascarehas

Cardiology-Dr. Meryll Cohen

Urology-Dr. Canning (performed the boys undescended testicle surgery at 2

years old)

Allergy-Dr. Beausoliel

Ophthalmology and Neurology we see doctors outside of CHOP. Would gladly

share the names with you if you are interested.

Hope this helps a little. I have been so happy with each one of these

doctors and feel comfortable recommending them to you. I am sure some of the

other families see other doctors within the sub specialty areas, so check with

them too. Any more questions please feel free to email me directly at

_Jayem14@..._ (mailto:Jayem14@...) . It sometimes takes me a couple of

days

to respond to email, but I will!!!

Murray

[Guest guest]

We live on Long Island, NY. has angle closure glaucoma. FOur years

ago we went to Boston, Mass Eye and Ear,, but then switched to Wills Eye

Institute in Philly 3 years ago. They are rated top for Glaucoma. We travel

there every 3-4months. He is saving her eye. Then earlier this year we went

to

CHOPS, the Cochealr Implant Center for a 2nd opinion, After working with NYU

for many years. We could not believe the thoroughness and professional we

felt there. WE also saw a lot of special children. We have worked with many

doctors in NYC, but I can honestly say, if we needed to do some things over

again (which i hope we dont) this is where I would go.

If you would like any names, #'s etc. for who we have used there, let me

know.

Best of luck

Cathie, Mom to 10 yr CHARGEr

[Guest guest]

We live on Long Island, NY. has angle closure glaucoma. FOur years

ago we went to Boston, Mass Eye and Ear,, but then switched to Wills Eye

Institute in Philly 3 years ago. They are rated top for Glaucoma. We travel

there every 3-4months. He is saving her eye. Then earlier this year we went

to

CHOPS, the Cochealr Implant Center for a 2nd opinion, After working with NYU

for many years. We could not believe the thoroughness and professional we

felt there. WE also saw a lot of special children. We have worked with many

doctors in NYC, but I can honestly say, if we needed to do some things over

again (which i hope we dont) this is where I would go.

If you would like any names, #'s etc. for who we have used there, let me

know.

Best of luck

Cathie, Mom to 10 yr CHARGEr

[Guest guest]

Bonnie,

Thanks. I will contact , if I remember correctly they live in New Jersey

and use CHOP. Thanks again.

Judy

Turk22082@... wrote:

Judy,

Contact Holloran who is on this list. Her e-mail is

_Kannew@..._ (mailto:Kannew@...) . Her son Timmy has gone there if

I remember

right. She's a wealth of info for all and is about as kind as a person can

get.

Bonnie

[Guest guest]

Judy-

I also forwarded your post to Colleen Feather. She's got a lot going on

with right now and hasn't been able to be faithful on the list. I'm

not certain that they dr at CHOP, but they live in Philly. Perhaps she'll

have some recommendations for you.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Judy-

I also forwarded your post to Colleen Feather. She's got a lot going on

with right now and hasn't been able to be faithful on the list. I'm

not certain that they dr at CHOP, but they live in Philly. Perhaps she'll

have some recommendations for you.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Judy-

I also forwarded your post to Colleen Feather. She's got a lot going on

with right now and hasn't been able to be faithful on the list. I'm

not certain that they dr at CHOP, but they live in Philly. Perhaps she'll

have some recommendations for you.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Hi ,

I really appreciate you sharing with me your list of doctors. My general

pediatricians informed me that they will gladly help in making decisions for

new specialists and I also plan on asking her DuPont Specialist who they

recommend at CHOP, but I value the input of you all so much on the list and I

knew it would be a great starting point. My negative, angry thoughts that were

with me earlier today when I discovered all of this new information have passed

and I keep thinking good things come with change, don't we all know that! So

hopefully we will be part of an amazing network of professionals working with

CHARGE individuals and their families at CHOP. Thanks for all of your help, I've

already printed out your list.

Judy

Jayem14@... wrote:

Hi Judy,

My name is Murray and I live in New Jersey and use a few doctors at

CHOP that I am pleased with. I have identical twins with CHARGE that are 9

years old...we have been dealing with CHOP most of their lives. (Don't quote me

on the spelling of names)

Dr Zackai is the genetic doctor that started with us. Dr Zackai has

consultants that work with her and they are the ones that helped us get

organized

with the sub specialty doctors...

ENT-Dr Shah

Audiology-Fran Batson

Endocrinology-Dr. Lorraine Katz

GI-Dr.Mascarehas

Cardiology-Dr. Meryll Cohen

Urology-Dr. Canning (performed the boys undescended testicle surgery at 2

years old)

Allergy-Dr. Beausoliel

Ophthalmology and Neurology we see doctors outside of CHOP. Would gladly

share the names with you if you are interested.

Hope this helps a little. I have been so happy with each one of these

doctors and feel comfortable recommending them to you. I am sure some of the

other families see other doctors within the sub specialty areas, so check with

them too. Any more questions please feel free to email me directly at

_Jayem14@..._ (mailto:Jayem14@...) . It sometimes takes me a couple of

days

to respond to email, but I will!!!

Murray

[Guest guest]

Hi ,

I really appreciate you sharing with me your list of doctors. My general

pediatricians informed me that they will gladly help in making decisions for

new specialists and I also plan on asking her DuPont Specialist who they

recommend at CHOP, but I value the input of you all so much on the list and I

knew it would be a great starting point. My negative, angry thoughts that were

with me earlier today when I discovered all of this new information have passed

and I keep thinking good things come with change, don't we all know that! So

hopefully we will be part of an amazing network of professionals working with

CHARGE individuals and their families at CHOP. Thanks for all of your help, I've

already printed out your list.

Judy

Jayem14@... wrote:

Hi Judy,

My name is Murray and I live in New Jersey and use a few doctors at

CHOP that I am pleased with. I have identical twins with CHARGE that are 9

years old...we have been dealing with CHOP most of their lives. (Don't quote me

on the spelling of names)

Dr Zackai is the genetic doctor that started with us. Dr Zackai has

consultants that work with her and they are the ones that helped us get

organized

with the sub specialty doctors...

ENT-Dr Shah

Audiology-Fran Batson

Endocrinology-Dr. Lorraine Katz

GI-Dr.Mascarehas

Cardiology-Dr. Meryll Cohen

Urology-Dr. Canning (performed the boys undescended testicle surgery at 2

years old)

Allergy-Dr. Beausoliel

Ophthalmology and Neurology we see doctors outside of CHOP. Would gladly

share the names with you if you are interested.

Hope this helps a little. I have been so happy with each one of these

doctors and feel comfortable recommending them to you. I am sure some of the

other families see other doctors within the sub specialty areas, so check with

them too. Any more questions please feel free to email me directly at

_Jayem14@..._ (mailto:Jayem14@...) . It sometimes takes me a couple of

days

to respond to email, but I will!!!

Murray

[Guest guest]

Thanks Cathie,

If you don't mind I would like the names of the doctors that you see from

CHOP. I'm putting together a list to compare and I would really like to choose

doctors who are very familiar with CHARGE. Thanks for your help.

Judy

NPTQueenie@... wrote:

We live on Long Island, NY. has angle closure glaucoma. FOur years

ago we went to Boston, Mass Eye and Ear,, but then switched to Wills Eye

Institute in Philly 3 years ago. They are rated top for Glaucoma. We travel

there every 3-4months. He is saving her eye. Then earlier this year we went

to

CHOPS, the Cochealr Implant Center for a 2nd opinion, After working with NYU

for many years. We could not believe the thoroughness and professional we

felt there. WE also saw a lot of special children. We have worked with many

doctors in NYC, but I can honestly say, if we needed to do some things over

again (which i hope we dont) this is where I would go.

If you would like any names, #'s etc. for who we have used there, let me

know.

Best of luck

Cathie, Mom to 10 yr CHARGEr

[Guest guest]

Thanks Cathie,

If you don't mind I would like the names of the doctors that you see from

CHOP. I'm putting together a list to compare and I would really like to choose

doctors who are very familiar with CHARGE. Thanks for your help.

Judy

NPTQueenie@... wrote:

We live on Long Island, NY. has angle closure glaucoma. FOur years

ago we went to Boston, Mass Eye and Ear,, but then switched to Wills Eye

Institute in Philly 3 years ago. They are rated top for Glaucoma. We travel

there every 3-4months. He is saving her eye. Then earlier this year we went

to

CHOPS, the Cochealr Implant Center for a 2nd opinion, After working with NYU

for many years. We could not believe the thoroughness and professional we

felt there. WE also saw a lot of special children. We have worked with many

doctors in NYC, but I can honestly say, if we needed to do some things over

again (which i hope we dont) this is where I would go.

If you would like any names, #'s etc. for who we have used there, let me

know.

Best of luck

Cathie, Mom to 10 yr CHARGEr

[Guest guest]

Michele,

Thanks for your help. I do remember reading from Colleen, and I think they

might use CHOP. Hopefully I'll hear from her. Thanks again.

Judy

Michele Westmaas wrote:

Judy-

I also forwarded your post to Colleen Feather. She's got a lot going on

with right now and hasn't been able to be faithful on the list. I'm

not certain that they dr at CHOP, but they live in Philly. Perhaps she'll

have some recommendations for you.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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[Guest guest]

It was my pleasure and good luck with all the new changes. It is tough to

have to do all the leg work, but that seems to be the situation in everything we

do for our kids.

[Guest guest]

It was my pleasure and good luck with all the new changes. It is tough to

have to do all the leg work, but that seems to be the situation in everything we

do for our kids.

[Guest guest]

It was my pleasure and good luck with all the new changes. It is tough to

have to do all the leg work, but that seems to be the situation in everything we

do for our kids.