Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 Catrina If I'm not included let me know. I'm in Cleveland OH. . Sent from my iPhone > We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks > > Catrina, Brie's Gram > > > > > TODAY(Beta) • Powered by Yahoo! > Man convicted of enormous U.S. tax scam > The California resident had hundreds of Canadians filing fraudulent returns to claim refunds. > Privacy Policy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 I would be happy to go on list, I am in New Zealand and dont know anyone in my country who has a child with pmg. Australia would be the closest to me. Who do i send my details to? Thanks Kat -original message- Subject: Our new " Contact a Family " program Date: 19/03/2012 1:41 pm We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks Catrina, Brie's Gram Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 I would be happy to be added. I am in Missouri. We go to Children's Mercy Hospital in Kansas City. Emmalee is going to be 3 the end of April. She is able to walk but is not talking YET! She has a feeding tube and we attend several therapies. Just let me know what information you need from me. ~Jodi Mom to Emmalee > We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks > > Catrina, Brie's Gram > > > > > TODAY(Beta) • Powered by Yahoo! > Player goofs on coach during live interview > Rick Pitino is talking about his team's big victory when one of his guys decides to have a little fun. > Privacy Policy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 *Hi Jodi, * * * *Thank you so much for your reply! * * * *If you can, just let me know if it is okay to add your email address to the list. What we are currently adding is:* * * *Your name* *Your location - at least state, and city if you wish* *If you wish to say your child's age and/or what type of pmg they have (optional)* *Your email address* * * *The person will be able to click on your email address and send you an email. We are not putting any other personal information on the website for your protection.* * * *You can reply back to this email catrina@... with the information and we will be glad to list you!* * * *Thanks so much for your willingness to help other!* * * *Sincerely,* *Catrina Byrge, R.N., President* * * * * > ** > > > I would be happy to be added. I am in Missouri. We go to Children's Mercy > Hospital in Kansas City. Emmalee is going to be 3 the end of April. She is > able to walk but is not talking YET! She has a feeding tube and we attend > several therapies. Just let me know what information you need from me. > > ~Jodi Mom to Emmalee > > > > > We've added a new program, " Contact a Family " on our website at > www.pmgawareness.org. You can find a parent/grandparent who understands > just what you are going through on our RESOURCES page. Click on the tab for > Contact A Family and they are listed by country, state, and city. If you > are interested in being added to the page, please let us know. We would > really love to have more people, especially internationally. I know we have > a lot of visitors from the UK and Australia! Thanks > > > > Catrina, Brie's Gram > > > > > > > > > > TODAY(Beta) • Powered by Yahoo! > > Player goofs on coach during live interview > > Rick Pitino is talking about his team's big victory when one of his guys > decides to have a little fun. > > > Privacy Policy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 *Hi Kat!* * * *Thank you so much for your reply! * * * *If you can, just let me know if it is okay to add your email address to the list. What we are currently adding is:* * * *Your name* *Your location - at least state, and city if you wish* *If you wish to say your child's age and/or what type of pmg they have (optional)* *Your email address* * * *The person will be able to click on your email address and send you an email. We are not putting any other personal information on the website for your protection.* * * *You can reply back to this email robin@... with the above information and we will be glad to list you!* * * *Thanks so much for your willingness to help us to meet the needs of others! * * * *Sincerely,* *Catrina Byrge, R.N., President* > ** > > > I would be happy to go on list, I am in New Zealand and dont know anyone > in my country who has a child with pmg. Australia would be the closest to > me. Who do i send my details to? Thanks > Kat > > > -original message- > Subject: Our new " Contact a Family " program > > Date: 19/03/2012 1:41 pm > > We've added a new program, " Contact a Family " on our website at > www.pmgawareness.org. You can find a parent/grandparent who understands > just what you are going through on our RESOURCES page. Click on the tab for > Contact A Family and they are listed by country, state, and city. If you > are interested in being added to the page, please let us know. We would > really love to have more people, especially internationally. I know we have > a lot of visitors from the UK and Australia! Thanks > > Catrina, Brie's Gram > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 *Hi ,* * * *We have you on the page already. Thank you so much for your willingness to help!* * * *Sincerely,* *Catrina Byrge, R.N., President * On Sun, Mar 18, 2012 at 8:43 PM, Holman wrote: > ** > > > Catrina > > If I'm not included let me know. I'm in Cleveland OH. > > . > > Sent from my iPhone > > > > > > We've added a new program, " Contact a Family " on our website at > www.pmgawareness.org. You can find a parent/grandparent who understands > just what you are going through on our RESOURCES page. Click on the tab for > Contact A Family and they are listed by country, state, and city. If you > are interested in being added to the page, please let us know. We would > really love to have more people, especially internationally. I know we have > a lot of visitors from the UK and Australia! Thanks > > > > Catrina, Brie's Gram > > > > > > > > > > TODAY(Beta) • Powered by Yahoo! > > Man convicted of enormous U.S. tax scam > > The California resident had hundreds of Canadians filing fraudulent > returns to claim refunds. > > Privacy Policy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 All of our son's care is at the Walter National Military Medical Center, Bethesda, MD. We are very happy with the specialties and quality of care provided. Julissa Sent from my iPad > *Hi ,* > * > * > *We have you on the page already. Thank you so much for your willingness to > help!* > * > * > *Sincerely,* > *Catrina Byrge, R.N., President > * > On Sun, Mar 18, 2012 at 8:43 PM, Holman > wrote: > >> ** >> >> >> Catrina >> >> If I'm not included let me know. I'm in Cleveland OH. >> >> . >> >> Sent from my iPhone >> >> >> >> >>> We've added a new program, " Contact a Family " on our website at >> www.pmgawareness.org. You can find a parent/grandparent who understands >> just what you are going through on our RESOURCES page. Click on the tab for >> Contact A Family and they are listed by country, state, and city. If you >> are interested in being added to the page, please let us know. We would >> really love to have more people, especially internationally. I know we have >> a lot of visitors from the UK and Australia! Thanks >>> >>> Catrina, Brie's Gram >>> >>> >>> >>> >>> TODAY(Beta) � Powered by Yahoo! >>> Man convicted of enormous U.S. tax scam >>> The California resident had hundreds of Canadians filing fraudulent >> returns to claim refunds. >>> Privacy Policy >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 *Hi Julissa,* * * *Do you see a certain specialist or clinic there? If so, do you have their contact information so that we can put it on the site for others?* * * *Doctor or Clinic name* *Phone number* *Specialty* * * *Thanks!* * * *Catrina Byrge, R.N., President * > ** > > > All of our son's care is at the Walter National Military Medical > Center, Bethesda, MD. We are very happy with the specialties and quality of > care provided. Julissa > > Sent from my iPad > > > > > *Hi ,* > > * > > * > > *We have you on the page already. Thank you so much for your willingness > to > > help!* > > * > > * > > *Sincerely,* > > *Catrina Byrge, R.N., President > > > * > > On Sun, Mar 18, 2012 at 8:43 PM, Holman > > wrote: > > > >> ** > > >> > >> > >> Catrina > >> > >> If I'm not included let me know. I'm in Cleveland OH. > >> > >> . > >> > >> Sent from my iPhone > >> > >> > >> > >> > >>> We've added a new program, " Contact a Family " on our website at > >> www.pmgawareness.org. You can find a parent/grandparent who understands > >> just what you are going through on our RESOURCES page. Click on the tab > for > >> Contact A Family and they are listed by country, state, and city. If you > >> are interested in being added to the page, please let us know. We would > >> really love to have more people, especially internationally. I know we > have > >> a lot of visitors from the UK and Australia! Thanks > >>> > >>> Catrina, Brie's Gram > >>> > >>> > >>> > >>> > >>> TODAY(Beta) � Powered by Yahoo! > >>> Man convicted of enormous U.S. tax scam > >>> The California resident had hundreds of Canadians filing fraudulent > >> returns to claim refunds. > >>> Privacy Policy > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 We are in westerville ohio. Chloe sees her specialists at nationwide childrens hospital in columbus. I would like to be added to the list. Thank you, jen Sent from my Droid Charge on Verizon 4GLTE - Re: Our new " Contact a Family " program I would be happy to be added. I am in Missouri. We go to Children's Mercy Hospital in Kansas City. Emmalee is going to be 3 the end of April. She is able to walk but is not talking YET! She has a feeding tube and we attend several therapies. Just let me know what information you need from me. ~Jodi Mom to Emmalee > We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks > > Catrina, Brie's Gram > > > > > TODAY(Beta) • Powered by Yahoo! > Player goofs on coach during live interview > Rick Pitino is talking about his team's big victory when one of his guys decides to have a little fun. > Privacy Policy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 *Hi Jen,* * * *Thank you so much for contacting us.* * * *If you can, just let us know if it is okay to add your email address to the list. What we are currently adding is:* * * *Your name* *Your location - at least state, and city if you wish* *If you wish to say your child's age and/or what type of pmg they have (optional)* *Your email address* * * *The person will be able to click on your email address and send you an email. We are not putting any other personal information on the website for your protection.* * * *Also, if you have a particular specialist, can you include the name, specialty, and phone number if you have it? * *You can reply back to this email: robin@... with the information and we will be glad to list you!* * * *Thank you so very much!* *Catrina Byrge, R.N., President* > ** > > > We are in westerville ohio. Chloe sees her specialists at nationwide > childrens hospital in columbus. I would like to be added to the list. > Thank you, jen > > Sent from my Droid Charge on Verizon 4GLTE > > > - Re: Our new " Contact a Family " program > > I would be happy to be added. I am in Missouri. We go to Children's Mercy > Hospital in Kansas City. Emmalee is going to be 3 the end of April. She is > able to walk but is not talking YET! She has a feeding tube and we attend > several therapies. Just let me know what information you need from me. > > ~Jodi Mom to Emmalee > > > > > We've added a new program, " Contact a Family " on our website at > www.pmgawareness.org. You can find a parent/grandparent who understands > just what you are going through on our RESOURCES page. Click on the tab for > Contact A Family and they are listed by country, state, and city. If you > are interested in being added to the page, please let us know. We would > really love to have more people, especially internationally. I know we have > a lot of visitors from the UK and Australia! Thanks > > > > Catrina, Brie's Gram > > > > > > > > > > TODAY(Beta) • Powered by Yahoo! > > Player goofs on coach during live interview > > Rick Pitino is talking about his team's big victory when one of his guys > decides to have a little fun. > > Privacy Policy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 My name is jen. Our chloe will be 4 in may. She has bilateral perisylvian polymicrogyria. We are in ohio. Her specialists are at nationwide childrens hospital in columbus, ohio. My email is jncoffel@... Sent from my Droid Charge on Verizon 4GLTE - Re: Our new " Contact a Family " program > > I would be happy to be added. I am in Missouri. We go to Children's Mercy > Hospital in Kansas City. Emmalee is going to be 3 the end of April. She is > able to walk but is not talking YET! She has a feeding tube and we attend > several therapies. Just let me know what information you need from me. > > ~Jodi Mom to Emmalee > > > > > We've added a new program, " Contact a Family " on our website at > www.pmgawareness.org. You can find a parent/grandparent who understands > just what you are going through on our RESOURCES page. Click on the tab for > Contact A Family and they are listed by country, state, and city. If you > are interested in being added to the page, please let us know. We would > really love to have more people, especially internationally. I know we have > a lot of visitors from the UK and Australia! Thanks > > > > Catrina, Brie's Gram > > > > > > > > > > TODAY(Beta) • Powered by Yahoo! > > Player goofs on coach during live interview > > Rick Pitino is talking about his team's big victory when one of his guys > decides to have a little fun. > > Privacy Policy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 We are in DFW area of Texas, but have a lot of network and knowledge of Houston area. Sent from my iPhone > We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks > > Catrina, Brie's Gram > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 Also, we currently see docs at cook children's in ft worth, but have seen several at Texas children's and UT in Houston. Sent from my iPhone > We are in DFW area of Texas, but have a lot of network and knowledge of Houston area. > > Sent from my iPhone > > > > > We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks > > > > Catrina, Brie's Gram > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 *Hi ,* * * *Were you wanting to be added to the list for " Contact a Family " or were you wanting to add providers to our site?* * * *Thank you for your response:)* * * On Sun, Mar 18, 2012 at 10:52 PM, Spezia wrote: > ** > > > We are in DFW area of Texas, but have a lot of network and knowledge of > Houston area. > > Sent from my iPhone > > > > > We've added a new program, " Contact a Family " on our website at > www.pmgawareness.org. You can find a parent/grandparent who understands > just what you are going through on our RESOURCES page. Click on the tab for > Contact A Family and they are listed by country, state, and city. If you > are interested in being added to the page, please let us know. We would > really love to have more people, especially internationally. I know we have > a lot of visitors from the UK and Australia! Thanks > > > > Catrina, Brie's Gram > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 Hi Jen Waving from a bit north in Cleveland! Sent from my iPhone > We are in westerville ohio. Chloe sees her specialists at nationwide childrens hospital in columbus. I would like to be added to the list. > Thank you, jen > > Sent from my Droid Charge on Verizon 4GLTE > > - Re: Our new " Contact a Family " program > > I would be happy to be added. I am in Missouri. We go to Children's Mercy Hospital in Kansas City. Emmalee is going to be 3 the end of April. She is able to walk but is not talking YET! She has a feeding tube and we attend several therapies. Just let me know what information you need from me. > > ~Jodi Mom to Emmalee > > > > > We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks > > > > Catrina, Brie's Gram > > > > > > > > > > TODAY(Beta) • Powered by Yahoo! > > Player goofs on coach during live interview > > Rick Pitino is talking about his team's big victory when one of his guys decides to have a little fun. > > Privacy Policy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 Both...I'll get on the desktop tomorrow and send some better, more in depth info. I'm not much for phone typing. Sent from my iPhone > *Hi ,* > * > * > *Were you wanting to be added to the list for " Contact a Family " or were > you wanting to add providers to our site?* > * > * > *Thank you for your response:)* > * > * > On Sun, Mar 18, 2012 at 10:52 PM, Spezia > wrote: > >> ** >> >> >> We are in DFW area of Texas, but have a lot of network and knowledge of >> Houston area. >> >> Sent from my iPhone >> >> >> >>> We've added a new program, " Contact a Family " on our website at >> www.pmgawareness.org. You can find a parent/grandparent who understands >> just what you are going through on our RESOURCES page. Click on the tab for >> Contact A Family and they are listed by country, state, and city. If you >> are interested in being added to the page, please let us know. We would >> really love to have more people, especially internationally. I know we have >> a lot of visitors from the UK and Australia! Thanks >>> >>> Catrina, Brie's Gram >>> >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 *That would be great! Here is the information we are looking for:* * * *If you can, just let me know if it is okay to add your email address to the list. What we are currently adding is:* * * *Your name* *Your location - at least state, and city if you wish* *If you wish to say your child's age and/or what type of pmg they have (optional)* *Your email address* * * *Provider name, specialty, clinic/hospital affiliation, phone number* * * * * *For the Contact a Family program, the person will be able to click on your email address and send you an email. We are not putting any other personal information on the website for your protection.* * * *You can reply back to this email robin@... with the above information and we will be glad to list you!* * * *Thanks so much for your willingness to help us to meet the needs of others! * * * On Sun, Mar 18, 2012 at 11:29 PM, Spezia wrote: > ** > > > Both...I'll get on the desktop tomorrow and send some better, more in > depth info. I'm not much for phone typing. > > Sent from my iPhone > > On Mar 18, 2012, at 9:56 PM, " Catrina Byrge " > wrote: > > > *Hi ,* > > * > > * > > *Were you wanting to be added to the list for " Contact a Family " or were > > you wanting to add providers to our site?* > > * > > * > > *Thank you for your response:)* > > * > > > * > > On Sun, Mar 18, 2012 at 10:52 PM, Spezia > > wrote: > > > >> ** > > >> > >> > >> We are in DFW area of Texas, but have a lot of network and knowledge of > >> Houston area. > >> > >> Sent from my iPhone > >> > >> > >> > >>> We've added a new program, " Contact a Family " on our website at > >> www.pmgawareness.org. You can find a parent/grandparent who understands > >> just what you are going through on our RESOURCES page. Click on the tab > for > >> Contact A Family and they are listed by country, state, and city. If you > >> are interested in being added to the page, please let us know. We would > >> really love to have more people, especially internationally. I know we > have > >> a lot of visitors from the UK and Australia! Thanks > >>> > >>> Catrina, Brie's Gram > >>> > >>> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 Please add me to the contact a family list. Kaylee is 5 months and has bilateral generlized pmg. I live in san Marcos Texas but see doctors in Houston Texas also. le shollar le16107@... Sent from my HTC on the Now Network from Sprint! ----- Reply message ----- Date: Sun, Mar 18, 2012 7:41 pm Subject: Our new " Contact a Family " program To: <polymicrogyria > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 Hi there I'd be happy to be listed as someone from Ireland should anyone wish to speak to someone in Ireland. I have a 13 year old daughter with PMG and we live in Dublin, Ireland. My phone number is 00353 86 8280632 and my email address is emilya1996@.... My home address is 8 Sandymount Road, Sandymount, Dublin 4. As far as I know there are 3 other families affected with PMG in Ireland that have made contact through the MPG website. Best regards. Marie Ainsworth Marie Marie Ainsworth Director Mount Street Group Mount Street Trustees Ltd t/a Mount Street Group, 18 Merrion Road, Ballsbridge, Dublin 4, Ireland. Registered in Ireland no. 449643. Tel. +353 1 639 0460. Mobile +353 86 8280632. Fax +353 1 6856710 Mount Street Group is regulated by the Central Bank of Ireland. www.mount-street.com This email and its contents and any attachments are confidential. In the event that you are not the addressee, please notify the sender immediately, delete the email from your inbox and destroy any copies you may have. If you are not the addressee you must not discuss or disclose the contents to any person and you must not store, copy the information in any medium, or use it for any purpose whatsoever. Copyright in this email and any attachments belong to Mount Street Group. As the author, we assert the right to be identified as such and object to any misuse thereof. From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of briesgram Sent: 19 March 2012 00:41 To: polymicrogyria Subject: Our new " Contact a Family " program We've added a new program, " Contact a Family " on our website at www.pmgawareness.org. You can find a parent/grandparent who understands just what you are going through on our RESOURCES page. Click on the tab for Contact A Family and they are listed by country, state, and city. If you are interested in being added to the page, please let us know. We would really love to have more people, especially internationally. I know we have a lot of visitors from the UK and Australia! Thanks Catrina, Brie's Gram Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 The Natl. Military Center has taken excellent care of out little Drake. It is wonderful having doctors that easily communicate with one another and have instant access to all of his record. It is invaluable that they can meet to best service Drake. His transition to the ketogenic diet has been very smooth because everyone is on board with the same plan. We can already see a difference! He is so full of energy! Everyone knows him and his case. Walter National Military Medical Center Peds: Seide, Witzard Neuro: Agurs, Latanya GI: Hefner, Jody ENT: Brietzke, Endo: Bauer, Opthal: Mickler, Casey Ortho: Jex, Jefferson Peds dev. Dr. Arne Nutritionist : Cheryl Issa Sent from my iPad > *Hi Julissa,* > * > * > *Do you see a certain specialist or clinic there? If so, do you have their > contact information so that we can put it on the site for others?* > * > * > *Doctor or Clinic name* > *Phone number* > *Specialty* > * > * > *Thanks!* > * > * > *Catrina Byrge, R.N., President > * > > > > ** > > > > > > All of our son's care is at the Walter National Military Medical > > Center, Bethesda, MD. We are very happy with the specialties and quality of > > care provided. Julissa > > > > Sent from my iPad > > > > > > > > > *Hi ,* > > > * > > > * > > > *We have you on the page already. Thank you so much for your willingness > > to > > > help!* > > > * > > > * > > > *Sincerely,* > > > *Catrina Byrge, R.N., President > > > > > * > > > On Sun, Mar 18, 2012 at 8:43 PM, Holman > > > wrote: > > > > > >> ** > > > > >> > > >> > > >> Catrina > > >> > > >> If I'm not included let me know. I'm in Cleveland OH. > > >> > > >> . > > >> > > >> Sent from my iPhone > > >> > > >> > > >> > > >> > > >>> We've added a new program, " Contact a Family " on our website at > > >> www.pmgawareness.org. You can find a parent/grandparent who understands > > >> just what you are going through on our RESOURCES page. Click on the tab > > for > > >> Contact A Family and they are listed by country, state, and city. If you > > >> are interested in being added to the page, please let us know. We would > > >> really love to have more people, especially internationally. I know we > > have > > >> a lot of visitors from the UK and Australia! Thanks > > >>> > > >>> Catrina, Brie's Gram > > >>> > > >>> > > >>> > > >>> > > >>> TODAY(Beta) � Powered by Yahoo! > > >>> Man convicted of enormous U.S. tax scam > > >>> The California resident had hundreds of Canadians filing fraudulent > > >> returns to claim refunds. > > >>> Privacy Policy > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 We are in Michigan. My son is 17 months with left side unilateral Pmg caused by cmv. We see specialists through the University of Michigan. He has Cerebral palsy, developmental delays, and hearing loss (60-75%). My email: kimat401@... Physical medicine u of m - Dr. Liza Green (she's our favorite, has experience with Pmg kids) Neurologist u of m - Dr. Lieber (funny, which we greatly appreciate) Pediatrician u of m - Dr. Madsion- Audiologist u of m - Kaboushek In Va, where he was born we had fantastic docs as well at the University of Virginia. Pediatrician: Quillian Pediatric Surgeon: Dr. (LOVE this man. Saved my sons life) “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > *Hi Julissa,* > * > * > *Do you see a certain specialist or clinic there? If so, do you have their > contact information so that we can put it on the site for others?* > * > * > *Doctor or Clinic name* > *Phone number* > *Specialty* > * > * > *Thanks!* > * > * > *Catrina Byrge, R.N., President > * > > > > ** > > > > > > All of our son's care is at the Walter National Military Medical > > Center, Bethesda, MD. We are very happy with the specialties and quality of > > care provided. Julissa > > > > Sent from my iPad > > > > > > > > > *Hi ,* > > > * > > > * > > > *We have you on the page already. Thank you so much for your willingness > > to > > > help!* > > > * > > > * > > > *Sincerely,* > > > *Catrina Byrge, R.N., President > > > > > * > > > On Sun, Mar 18, 2012 at 8:43 PM, Holman > > > wrote: > > > > > >> ** > > > > >> > > >> > > >> Catrina > > >> > > >> If I'm not included let me know. I'm in Cleveland OH. > > >> > > >> . > > >> > > >> Sent from my iPhone > > >> > > >> > > >> > > >> > > >>> We've added a new program, " Contact a Family " on our website at > > >> www.pmgawareness.org. You can find a parent/grandparent who understands > > >> just what you are going through on our RESOURCES page. Click on the tab > > for > > >> Contact A Family and they are listed by country, state, and city. If you > > >> are interested in being added to the page, please let us know. We would > > >> really love to have more people, especially internationally. I know we > > have > > >> a lot of visitors from the UK and Australia! Thanks > > >>> > > >>> Catrina, Brie's Gram > > >>> > > >>> > > >>> > > >>> > > >>> TODAY(Beta) � Powered by Yahoo! > > >>> Man convicted of enormous U.S. tax scam > > >>> The California resident had hundreds of Canadians filing fraudulent > > >> returns to claim refunds. > > >>> Privacy Policy > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 He was just discharched from pulmonology (yay!!!) Pulmonologist u of m - Dr. Arteta “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > We are in Michigan. My son is 17 months with left side unilateral Pmg caused by cmv. We see specialists through the University of Michigan. He has Cerebral palsy, developmental delays, and hearing loss (60-75%). My email: kimat401@... > > Physical medicine u of m - Dr. Liza Green (she's our favorite, has experience with Pmg kids) > Neurologist u of m - Dr. Lieber (funny, which we greatly appreciate) > Pediatrician u of m - Dr. Madsion- > Audiologist u of m - Kaboushek > > In Va, where he was born we had fantastic docs as well at the University of Virginia. > > Pediatrician: Quillian > Pediatric Surgeon: Dr. (LOVE this man. Saved my sons life) > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > *Hi Julissa,* > > * > > * > > *Do you see a certain specialist or clinic there? If so, do you have their > > contact information so that we can put it on the site for others?* > > * > > * > > *Doctor or Clinic name* > > *Phone number* > > *Specialty* > > * > > * > > *Thanks!* > > * > > * > > *Catrina Byrge, R.N., President > > * > > > > > > > ** > > > > > > > > > All of our son's care is at the Walter National Military Medical > > > Center, Bethesda, MD. We are very happy with the specialties and quality of > > > care provided. Julissa > > > > > > Sent from my iPad > > > > > > > > > > > > > *Hi ,* > > > > * > > > > * > > > > *We have you on the page already. Thank you so much for your willingness > > > to > > > > help!* > > > > * > > > > * > > > > *Sincerely,* > > > > *Catrina Byrge, R.N., President > > > > > > > * > > > > On Sun, Mar 18, 2012 at 8:43 PM, Holman > > > > wrote: > > > > > > > >> ** > > > > > > >> > > > >> > > > >> Catrina > > > >> > > > >> If I'm not included let me know. I'm in Cleveland OH. > > > >> > > > >> . > > > >> > > > >> Sent from my iPhone > > > >> > > > >> > > > >> > > > >> > > > >>> We've added a new program, " Contact a Family " on our website at > > > >> www.pmgawareness.org. You can find a parent/grandparent who understands > > > >> just what you are going through on our RESOURCES page. Click on the tab > > > for > > > >> Contact A Family and they are listed by country, state, and city. If you > > > >> are interested in being added to the page, please let us know. We would > > > >> really love to have more people, especially internationally. I know we > > > have > > > >> a lot of visitors from the UK and Australia! Thanks > > > >>> > > > >>> Catrina, Brie's Gram > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> TODAY(Beta) � Powered by Yahoo! > > > >>> Man convicted of enormous U.S. tax scam > > > >>> The California resident had hundreds of Canadians filing fraudulent > > > >> returns to claim refunds. > > > >>> Privacy Policy > > > >> > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 Does anyone know how to unsubscribe to this group. My daughter was actually diagnosed with Angelman Syndrome and not PMG. So I am a part of there email group now. Good luck to all of you and best wishes. > ** > > > He was just discharched from pulmonology (yay!!!) > > Pulmonologist u of m - Dr. Arteta > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > We are in Michigan. My son is 17 months with left side unilateral Pmg > caused by cmv. We see specialists through the University of Michigan. He > has Cerebral palsy, developmental delays, and hearing loss (60-75%). My > email: kimat401@... > > > > Physical medicine u of m - Dr. Liza Green (she's our favorite, has > experience with Pmg kids) > > Neurologist u of m - Dr. Lieber (funny, which we greatly > appreciate) > > Pediatrician u of m - Dr. Madsion- > > Audiologist u of m - Kaboushek > > > > In Va, where he was born we had fantastic docs as well at the University > of Virginia. > > > > Pediatrician: Quillian > > Pediatric Surgeon: Dr. (LOVE this man. Saved my sons life) > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > On Mar 18, 2012, at 10:29 PM, Catrina Byrge > wrote: > > > > > *Hi Julissa,* > > > * > > > * > > > *Do you see a certain specialist or clinic there? If so, do you have > their > > > contact information so that we can put it on the site for others?* > > > * > > > * > > > *Doctor or Clinic name* > > > *Phone number* > > > *Specialty* > > > * > > > * > > > *Thanks!* > > > * > > > * > > > *Catrina Byrge, R.N., President > > > * > > > > > > > > > > ** > > > > > > > > > > > > All of our son's care is at the Walter National Military Medical > > > > Center, Bethesda, MD. We are very happy with the specialties and > quality of > > > > care provided. Julissa > > > > > > > > Sent from my iPad > > > > > > > > On Mar 18, 2012, at 10:12 PM, Catrina Byrge > wrote: > > > > > > > > > *Hi ,* > > > > > * > > > > > * > > > > > *We have you on the page already. Thank you so much for your > willingness > > > > to > > > > > help!* > > > > > * > > > > > * > > > > > *Sincerely,* > > > > > *Catrina Byrge, R.N., President > > > > > > > > > * > > > > > On Sun, Mar 18, 2012 at 8:43 PM, Holman > > > > > wrote: > > > > > > > > > >> ** > > > > > > > > >> > > > > >> > > > > >> Catrina > > > > >> > > > > >> If I'm not included let me know. I'm in Cleveland OH. > > > > >> > > > > >> . > > > > >> > > > > >> Sent from my iPhone > > > > >> > > > > >> > > > > >> On Mar 18, 2012, at 8:41 PM, " briesgram " > wrote: > > > > >> > > > > >>> We've added a new program, " Contact a Family " on our website at > > > > >> www.pmgawareness.org. You can find a parent/grandparent who > understands > > > > >> just what you are going through on our RESOURCES page. Click on > the tab > > > > for > > > > >> Contact A Family and they are listed by country, state, and city. > If you > > > > >> are interested in being added to the page, please let us know. We > would > > > > >> really love to have more people, especially internationally. I > know we > > > > have > > > > >> a lot of visitors from the UK and Australia! Thanks > > > > >>> > > > > >>> Catrina, Brie's Gram > > > > >>> > > > > >>> > > > > >>> > > > > >>> > > > > >>> TODAY(Beta) � Powered by Yahoo! > > > > >>> Man convicted of enormous U.S. tax scam > > > > >>> The California resident had hundreds of Canadians filing > fraudulent > > > > >> returns to claim refunds. > > > > >>> Privacy Policy > > > > >> > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 Please add me to the group. My granddaughter Lindsey is 9 years old with bilateral PMG/CP/controlled seizures/ macrocephley/non-verbal/non-ambulatory. She sees a neurologist at Cromer's Children's Hospital in Chicago who is awesome. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 Hi Bonnie, I would love to add you. Can you still me what city/state or country you live in and your email address please? We're so happy that you want to be a blessing to others!! Thanks, Catrina ________________________________ From: polymicrogyria [polymicrogyria ] on behalf of Zagrovich@ yahoo.com [zagrovich@...] Sent: Monday, March 19, 2012 9:39 PM To: polymicrogyria Subject: Re: Our new " Contact a Family " program Please add me to the group. My granddaughter Lindsey is 9 years old with bilateral PMG/CP/controlled seizures/ macrocephley/non-verbal/non-ambulatory. She sees a neurologist at Cromer's Children's Hospital in Chicago who is awesome. Bonnie Quote Link to comment Share on other sites More sharing options...
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