Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 were do you live? I was wondering cause the 10hr flight cause I live in Oregon and that is how long it is gona take me. How are you flying(what company)?I am gona go for a am flight it would be easer i think. Sacora mom nick 12 Bisson <proudmom@...> wrote: WOW>>> Its going to take me over 10 hours to get out there WOW 2 hour layover in toronto! Wonder if I should just fly back during the night... then I have a layover at 6 am til 8 am and get back at 10 am here... to get to NIH id leave here at 7 am which isnt bad..but id get there mid day that I can handle then I get to t he Inn at a decent time.. but id be leaving there at midnight ..that might be pretty rough!! be easier to leave in the am i think at like 10-11 and get back at like 10-11 !! lol hmmm i just dont know lol mom to kiara 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 i am flying from Alberta Canada!! Re: flights were do you live? I was wondering cause the 10hr flight cause I live in Oregon and that is how long it is gona take me. How are you flying(what company)?I am gona go for a am flight it would be easer i think. Sacora mom nick 12 Bisson <proudmom@...> wrote: WOW>>> Its going to take me over 10 hours to get out there WOW 2 hour layover in toronto! Wonder if I should just fly back during the night... then I have a layover at 6 am til 8 am and get back at 10 am here... to get to NIH id leave here at 7 am which isnt bad..but id get there mid day that I can handle then I get to t he Inn at a decent time.. but id be leaving there at midnight ..that might be pretty rough!! be easier to leave in the am i think at like 10-11 and get back at like 10-11 !! lol hmmm i just dont know lol mom to kiara 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Sacora The hardest is having to be there to make sure I dont miss the last shuttle and to make sure we are there in time for orientation! Re: flights were do you live? I was wondering cause the 10hr flight cause I live in Oregon and that is how long it is gona take me. How are you flying(what company)?I am gona go for a am flight it would be easer i think. Sacora mom nick 12 Bisson <proudmom@...> wrote: WOW>>> Its going to take me over 10 hours to get out there WOW 2 hour layover in toronto! Wonder if I should just fly back during the night... then I have a layover at 6 am til 8 am and get back at 10 am here... to get to NIH id leave here at 7 am which isnt bad..but id get there mid day that I can handle then I get to t he Inn at a decent time.. but id be leaving there at midnight ..that might be pretty rough!! be easier to leave in the am i think at like 10-11 and get back at like 10-11 !! lol hmmm i just dont know lol mom to kiara 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 Hello Does anyone know of any other flights besides angel flight that don't go that far when were in Oregon, then Miracle Flights don't have the resource til next month, along with Delta from Mercy Airlines. Any more suggestions? Thanks Fran Bulone <fbulone@...> wrote: ANYONE with a diagnosis of Periodic Fever can apply for the research study at NIH. You do NOT need a diagnosis of a genetic fever disorder or have a genetic mutation prior to going to NIH. YOU DO need documentation from a MEDICAL doctor indicating periodic fevers... as ALWAYS. You need a letter sent with the application and lab studies such as CBC with differential and Sed rate (esr) and CRP and any immunology studies done while your child is seeing a pediatrician or specialist for the fevers. This helps create a clinical picture when the child's medical file is pulled for review BEFORE being accepted and an appointment is made. It will take a year or MORE to get into the study even with the documentation because of the INCREASE in patient applications. ph and I participate in the research and I am in direct contact with Beverly the research RN. There are rumours flying all over the place which are inaccurate. Dr. Kastner was made Clinical Director back in 2005 and is remaining in this position at the NIH. He is NOT going anywhere nor is he changing postions at this time or in any NEAR future. The studies continue as they were written and will not and CANNOT change protocol. Hope this helps with the rumours. Hope to see some of you at NIH on Sept 10, 11, 12. God Bless Fran Fran Bulone RN Mom to ph 8yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06 Waxhaw NC / http://www.caringbridge.org/visit/josephbulone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 call Elaine at mercy medical airlift she can forward on to you some suggestions Re: FLIGHTS Hello Does anyone know of any other flights besides angel flight that don't go that far when were in Oregon, then Miracle Flights don't have the resource til next month, along with Delta from Mercy Airlines. Any more suggestions? Thanks Fran Bulone <fbulone@...> wrote: ANYONE with a diagnosis of Periodic Fever can apply for the research study at NIH. You do NOT need a diagnosis of a genetic fever disorder or have a genetic mutation prior to going to NIH. YOU DO need documentation from a MEDICAL doctor indicating periodic fevers... as ALWAYS. You need a letter sent with the application and lab studies such as CBC with differential and Sed rate (esr) and CRP and any immunology studies done while your child is seeing a pediatrician or specialist for the fevers. This helps create a clinical picture when the child's medical file is pulled for review BEFORE being accepted and an appointment is made. It will take a year or MORE to get into the study even with the documentation because of the INCREASE in patient applications. ph and I participate in the research and I am in direct contact with Beverly the research RN. There are rumours flying all over the place which are inaccurate. Dr. Kastner was made Clinical Director back in 2005 and is remaining in this position at the NIH. He is NOT going anywhere nor is he changing postions at this time or in any NEAR future. The studies continue as they were written and will not and CANNOT change protocol. Hope this helps with the rumours. Hope to see some of you at NIH on Sept 10, 11, 12. God Bless Fran Fran Bulone RN Mom to ph 8yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06 Waxhaw NC / http://www.caringbridge.org/visit/josephbulone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 ANYONE with a diagnosis of Periodic Fever can apply for the research study at NIH. You do NOT need a diagnosis of a genetic fever disorder or have a genetic mutation prior to going to NIH. > > YOU DO need documentation from a MEDICAL doctor indicating periodic fevers... as ALWAYS. You need a letter sent with the application and lab studies such as CBC with differential and Sed rate (esr) and CRP and any immunology studies done while your child is seeing a pediatrician or specialist for the fevers. This helps create a clinical picture when the child's medical file is pulled for review BEFORE being accepted and an appointment is made. > > It will take a year or MORE to get into the study even with the documentation because of the INCREASE in patient applications. > > ph and I participate in the research and I am in direct contact with Beverly the research RN. There are rumours flying all over the place which are inaccurate. > > Dr. Kastner was made Clinical Director back in 2005 and is remaining in this position at the NIH. He is NOT going anywhere nor is he changing postions at this time or in any NEAR future. > > The studies continue as they were written and will not and CANNOT change protocol. > > Hope this helps with the rumours. > > Hope to see some of you at NIH on Sept 10, 11, 12. > God Bless > Fran > Fran Bulone RN > Mom to ph 8yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06 > Waxhaw NC > / > http://www.caringbridge.org/visit/josephbulone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 Thank you for the information. I will try they could not help us the other two times I tried so we will see. The doctor fills out the application? Thank so much for the information. Sacora Carey <app_37190@...> wrote: ANYONE with a diagnosis of Periodic Fever can apply for the research study at NIH. You do NOT need a diagnosis of a genetic fever disorder or have a genetic mutation prior to going to NIH. > > YOU DO need documentation from a MEDICAL doctor indicating periodic fevers... as ALWAYS. You need a letter sent with the application and lab studies such as CBC with differential and Sed rate (esr) and CRP and any immunology studies done while your child is seeing a pediatrician or specialist for the fevers. This helps create a clinical picture when the child's medical file is pulled for review BEFORE being accepted and an appointment is made. > > It will take a year or MORE to get into the study even with the documentation because of the INCREASE in patient applications. > > ph and I participate in the research and I am in direct contact with Beverly the research RN. There are rumours flying all over the place which are inaccurate. > > Dr. Kastner was made Clinical Director back in 2005 and is remaining in this position at the NIH. He is NOT going anywhere nor is he changing postions at this time or in any NEAR future. > > The studies continue as they were written and will not and CANNOT change protocol. > > Hope this helps with the rumours. > > Hope to see some of you at NIH on Sept 10, 11, 12. > God Bless > Fran > Fran Bulone RN > Mom to ph 8yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06 > Waxhaw NC > / > http://www.caringbridge.org/visit/josephbulone > > Quote Link to comment Share on other sites More sharing options...
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