Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 We had a good day at NIH yesterday. We feel so blessed to have been able to come here. Everyone here is wonderful, especially Beverly Barham and Dr. Chitkara. The big and sad news is that Dr. Chitkara is leaving at the end of the month to take a private practice job in San Diego. She just announced this a week or two ago. They are not sure yet what the long term impact will be on the part of their study. They are hoping to find someone to take on the work she was doing, but that has not happened yet. This will mean that the wait times for kids to get in will be longer, at least for a while. There is one way to get in quickly if you are able to get to Connecticut next week. The study has been granted special permission for Dr. Chitkara to travel to Hartford to recruit patients. She will be there March 6-7. This is being done in cooperation with Dr. Feder in Hartford. They will do the initial interview, exam, and blood work on these kids there, without them having to travel to NIH. They only have room to see about 20 kids (some of which are already lined up). If you are interested, you would need to get in touch by tomorrow so that the consent forms could be sent out and processed in time. If you would like to participate in this opportunity, call Kathy at NIH at 301-435-6242. Dr. Chitkara gave permission for me to post this here and is hoping that some of you will be able to do this. This is a great opportunity for anyone caught in the long wait, or even for people who are not yet in the system, especially those who live in the northeast. Sorry for the short notice, but I hope some of you will be able to do this. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Yes..my grandson was scheduled to go to NIH for this past Mon....but Dr. Feder called my daughter to reschedule to Ct....We are so glad not to have to travel so far...and he was tentatively diagnosed by Dr. Feder at 2 yrs. of age. Cookie Grandma to Peyton age 5 Lyme, ct. --- Klooster <andreaklooster@...> wrote: > We had a good day at NIH yesterday. We feel so > blessed to have been able to > come here. Everyone here is wonderful, especially > Beverly Barham and Dr. > Chitkara. > > The big and sad news is that Dr. Chitkara is leaving > at the end of the month > to take a private practice job in San Diego. She > just announced this a week > or two ago. They are not sure yet what the long term > impact will be on the > part of their study. They are hoping to find > someone to take on the > work she was doing, but that has not happened yet. > This will mean that the > wait times for kids to get in will be longer, > at least for a while. > > There is one way to get in quickly if you are able > to get to Connecticut > next week. The study has been granted special > permission for Dr. Chitkara to > travel to Hartford to recruit patients. She will be > there March 6-7. This is > being done in cooperation with Dr. Feder in > Hartford. They will do the > initial interview, exam, and blood work on these > kids there, without them > having to travel to NIH. They only have room to see > about 20 kids (some of > which are already lined up). If you are interested, > you would need to get in > touch by tomorrow so that the consent forms could be > sent out and processed > in time. If you would like to participate in this > opportunity, call Kathy at > NIH at 301-435-6242. Dr. Chitkara gave permission > for me to post this here > and is hoping that some of you will be able to do > this. > > This is a great opportunity for anyone caught in the > long wait, or even for > people who are not yet in the system, especially > those who live in the > northeast. Sorry for the short notice, but I hope > some of you will be able > to do this. > > - > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 -- my child is newly diagnosed with and I have been reading alot of postings that talk about NIH. Could you tell me where it is and how I contact them about my son preston. thanks for your help mom of preston 2yrs old > > We had a good day at NIH yesterday. We feel so blessed to have been able to > come here. Everyone here is wonderful, especially Beverly Barham and Dr. > Chitkara. > > The big and sad news is that Dr. Chitkara is leaving at the end of the month > to take a private practice job in San Diego. She just announced this a week > or two ago. They are not sure yet what the long term impact will be on the > part of their study. They are hoping to find someone to take on the > work she was doing, but that has not happened yet. This will mean that the > wait times for kids to get in will be longer, at least for a while. > > There is one way to get in quickly if you are able to get to Connecticut > next week. The study has been granted special permission for Dr. Chitkara to > travel to Hartford to recruit patients. She will be there March 6- 7. This is > being done in cooperation with Dr. Feder in Hartford. They will do the > initial interview, exam, and blood work on these kids there, without them > having to travel to NIH. They only have room to see about 20 kids (some of > which are already lined up). If you are interested, you would need to get in > touch by tomorrow so that the consent forms could be sent out and processed > in time. If you would like to participate in this opportunity, call Kathy at > NIH at 301-435-6242. Dr. Chitkara gave permission for me to post this here > and is hoping that some of you will be able to do this. > > This is a great opportunity for anyone caught in the long wait, or even for > people who are not yet in the system, especially those who live in the > northeast. Sorry for the short notice, but I hope some of you will be able > to do this. > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2007 Report Share Posted March 7, 2007 , NIH is in Bethesda, land, outside Washington DC. There is a lot of information about the NIH fever studies in the links section of the group. Here is a link to the specific study which includes contact information. The first step is to request an application. Your doctor will need to write a referral letter to get you into the study. http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_94-AR-0105.html@fam\ ilial@mediterranean Good luck. - On 3/6/07, cherokeejl <cherokeejl@...> wrote: > > -- my child is newly diagnosed with and I have been > reading alot of postings that talk about NIH. Could you tell me > where it is and how I contact them about my son preston. > thanks for your help > mom of preston 2yrs old > > > > > > We had a good day at NIH yesterday. We feel so blessed to have > been able to > > come here. Everyone here is wonderful, especially Beverly Barham > and Dr. > > Chitkara. > > > > The big and sad news is that Dr. Chitkara is leaving at the end of > the month > > to take a private practice job in San Diego. She just announced > this a week > > or two ago. They are not sure yet what the long term impact will > be on the > > part of their study. They are hoping to find someone to take > on the > > work she was doing, but that has not happened yet. This will mean > that the > > wait times for kids to get in will be longer, at least for a > while. > > > > There is one way to get in quickly if you are able to get to > Connecticut > > next week. The study has been granted special permission for Dr. > Chitkara to > > travel to Hartford to recruit patients. She will be there March 6- > 7. This is > > being done in cooperation with Dr. Feder in Hartford. They will do > the > > initial interview, exam, and blood work on these kids there, > without them > > having to travel to NIH. They only have room to see about 20 kids > (some of > > which are already lined up). If you are interested, you would need > to get in > > touch by tomorrow so that the consent forms could be sent out and > processed > > in time. If you would like to participate in this opportunity, > call Kathy at > > NIH at 301-435-6242. Dr. Chitkara gave permission for me to post > this here > > and is hoping that some of you will be able to do this. > > > > This is a great opportunity for anyone caught in the long wait, or > even for > > people who are not yet in the system, especially those who live in > the > > northeast. Sorry for the short notice, but I hope some of you will > be able > > to do this. > > > > - > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2007 Report Share Posted March 7, 2007 If you explore the file section and the link section at the site I created, there is an ENORMOUS amount of info with links to the study and NIH and links to the doctors in the study, the contact info which gets you the application (Beverly), as well as lots of articles etc... NIH is the research center run by the US government and once accepted (takes up to a year) all treatment and evaluations are free.... If you saved the welcome letter I sent it explains all of this and more. God Bless, Fran Fran Bulone RN Mom to ph 7yr 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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