Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Great job on the video Good luck, We have done stemcells with Mason and have seen some nice improvements. Rita In a message dated 9/13/2009 10:17:10 P.M. Eastern Daylight Time, thecammygirl@... writes: Hi all, Below is a link to a fundraiser video for my daughter - . It is titled 's Challenge _http://www.youtube.http://wwwhttp://www.yo_ (http://www.youtube.com/watch?v=7SoJ33RQzGM) We want her to have the stem cell transplant to give her brain a chance to heal, to give her a chance to talk, to be independent - Well, I'm preaching to the choir!! You all know what it is to hope. She is severely autistic, non-verbal, and has irretractable epilepsy. I want to do everything I can to heal her so that she won't ever be at the mercy of someone that doesn't care for her happiness like I do. The stem cell transplant is very expensive. As you all know, if everyone would help, it will make this possible. It is set up thru the National Transplant Assistance Fund so people can be assured their donation is being used on the transplant. Please help if you can and send the link to your friends and family to give them the opportunity to help too. Best of luck to all of you and the challenges you face everyday too!! National Transplant Assistance Fund www.transplantfund.www In Honor of Moreno 150 N. Radnor Chester Road; Ste F-120 Radnor, PA 19087 1.800.642.8399 Sincerely, Cammy _http://www.youtube.http://wwwhttp://www.yo_ (http://www.youtube.com/watch?v=7SoJ33RQzGM) (or search YouTube for epilepsy + stem cell transplant and then look for 's Challenge.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Hi all, Below is a link to a fundraiser video for my daughter - . It is titled 's Challenge We want her to have the stem cell transplant to give her brain a chance to heal, to give her a chance to talk, to be independent - Well, I'm preaching to the choir!! You all know what it is to hope. She is severely autistic, non-verbal, and has irretractable epilepsy. I want to do everything I can to heal her so that she won't ever be at the mercy of someone that doesn't care for her happiness like I do. The stem cell transplant is very expensive. As you all know, if everyone would help, it will make this possible. It is set up thru the National Transplant Assistance Fund so people can be assured their donation is being used on the transplant. Please help if you can and send the link to your friends and family to give them the opportunity to help too. Best of luck to all of you and the challenges you face everyday too!! National Transplant Assistance Fund www.transplantfund.org In Honor of Moreno 150 N. Radnor Chester Road; Ste F-120 Radnor, PA 19087 1.800.642.8399 Sincerely, Cammy (or search YouTube for epilepsy + stem cell transplant and then look for 's Challenge.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Thank you Rita; it is good to hear your child is doing better after treatment!! If you would please help us in our fundraising effort and pass this link on to others with a heart, we will get treated too!! Thank you so much, Cammy > > Great job on the video Good luck, We have done stemcells with Mason and > have seen some nice improvements. > > Rita > > > In a message dated 9/13/2009 10:17:10 P.M. Eastern Daylight Time, > thecammygirl@... writes: > > > > > Hi all, > > Below is a link to a fundraiser video for my daughter - . > > It is titled 's Challenge > > _http://www.youtube.http://wwwhttp://www.yo_ > (http://www.youtube.com/watch?v=7SoJ33RQzGM) > > We want her to have the stem cell transplant to give her brain a chance to > heal, to give her a chance to talk, to be independent - Well, I'm > preaching to the choir!! You all know what it is to hope. She is severely autistic, > non-verbal, and has irretractable epilepsy. I want to do everything I can > to heal her so that she won't ever be at the mercy of someone that doesn't > care for her happiness like I do. > > The stem cell transplant is very expensive. As you all know, if everyone > would help, it will make this possible. It is set up thru the National > Transplant Assistance Fund so people can be assured their donation is being used > on the transplant. > > Please help if you can and send the link to your friends and family to > give them the opportunity to help too. > > Best of luck to all of you and the challenges you face everyday too!! > > National Transplant Assistance Fund > www.transplantfund.www > In Honor of Moreno > 150 N. Radnor Chester Road; Ste F-120 > Radnor, PA 19087 > 1.800.642.8399 > > Sincerely, > Cammy > _http://www.youtube.http://wwwhttp://www.yo_ > (http://www.youtube.com/watch?v=7SoJ33RQzGM) > > (or search YouTube for epilepsy + stem cell transplant and then look for > 's Challenge.) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 If stem cells can be demonstrated/proven beneficial, I encourage you both to pursue Medicaid reimbursement as this should be covered under the EPSDT statute, which mandates states cover anything " necessary...to correct or ameliorate " " whether or not such services are covered under the State plan. " DF [ ] Re: 's Challenge > >Thank you Rita; it is good to hear your child is doing better after treatment!! > >If you would please help us in our fundraising effort and pass this link on to others with a heart, we will get treated too!! > >Thank you so much, > >Cammy > > >> >> Great job on the video Good luck, We have done stemcells with Mason and >> have seen some nice improvements. >> >> Rita >> >> >> In a message dated 9/13/2009 10:17:10 P.M. Eastern Daylight Time, >> thecammygirl@... writes: >> >> >> >> >> Hi all, >> >> Below is a link to a fundraiser video for my daughter - . >> >> It is titled 's Challenge >> >> _http://www.youtube.http://wwwhttp://www.yo_ >> (http://www.youtube.com/watch?v=7SoJ33RQzGM) >> >> We want her to have the stem cell transplant to give her brain a chance to >> heal, to give her a chance to talk, to be independent - Well, I'm >> preaching to the choir!! You all know what it is to hope. She is severely autistic, >> non-verbal, and has irretractable epilepsy. I want to do everything I can >> to heal her so that she won't ever be at the mercy of someone that doesn't >> care for her happiness like I do. >> >> The stem cell transplant is very expensive. As you all know, if everyone >> would help, it will make this possible. It is set up thru the National >> Transplant Assistance Fund so people can be assured their donation is being used >> on the transplant. >> >> Please help if you can and send the link to your friends and family to >> give them the opportunity to help too. >> >> Best of luck to all of you and the challenges you face everyday too!! >> >> National Transplant Assistance Fund >> www.transplantfund.www >> In Honor of Moreno >> 150 N. Radnor Chester Road; Ste F-120 >> Radnor, PA 19087 >> 1.800.642.8399 >> >> Sincerely, >> Cammy >> _http://www.youtube.http://wwwhttp://www.yo_ >> (http://www.youtube.com/watch?v=7SoJ33RQzGM) >> >> (or search YouTube for epilepsy + stem cell transplant and then look for >> 's Challenge.) >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Hi , The US is so far behind in stem cell research that my child will be an old lady before it is an approved treatment in the US. is quickly changing into an adult and I am facing difficulties I don't want to think about. I want to help her - that's all. Thx, Cammy > >> > >> Great job on the video Good luck, We have done stemcells with Mason and > >> have seen some nice improvements. > >> > >> Rita > >> > >> > >> In a message dated 9/13/2009 10:17:10 P.M. Eastern Daylight Time, > >> thecammygirl@ writes: > >> > >> > >> > >> > >> Hi all, > >> > >> Below is a link to a fundraiser video for my daughter - . > >> > >> It is titled 's Challenge > >> > >> _http://www.youtube.http://wwwhttp://www.yo_ > >> (http://www.youtube.com/watch?v=7SoJ33RQzGM) > >> > >> We want her to have the stem cell transplant to give her brain a chance to > >> heal, to give her a chance to talk, to be independent - Well, I'm > >> preaching to the choir!! You all know what it is to hope. She is severely autistic, > >> non-verbal, and has irretractable epilepsy. I want to do everything I can > >> to heal her so that she won't ever be at the mercy of someone that doesn't > >> care for her happiness like I do. > >> > >> The stem cell transplant is very expensive. As you all know, if everyone > >> would help, it will make this possible. It is set up thru the National > >> Transplant Assistance Fund so people can be assured their donation is being used > >> on the transplant. > >> > >> Please help if you can and send the link to your friends and family to > >> give them the opportunity to help too. > >> > >> Best of luck to all of you and the challenges you face everyday too!! > >> > >> National Transplant Assistance Fund > >> www.transplantfund.www > >> In Honor of Moreno > >> 150 N. Radnor Chester Road; Ste F-120 > >> Radnor, PA 19087 > >> 1.800.642.8399 > >> > >> Sincerely, > >> Cammy > >> _http://www.youtube.http://wwwhttp://www.yo_ > >> (http://www.youtube.com/watch?v=7SoJ33RQzGM) > >> > >> (or search YouTube for epilepsy + stem cell transplant and then look for > >> 's Challenge.) > >> > >> > >> > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Cammy- Don't be so sure. Have you tried looking for an applicable clinical trial? We needed a bone marrow transplant for our daughter (previously only tried once or twice for her rare cancer, notably in Germany), and found one that was applicable. We could have gone to PA (the main site), but our local hospital in Boston held an IRB to make that another official clinical site for the study. We would have re-mortgaged the house to do it anyways, but it was all approved up front and paid for by insurance because it was an official clinical trial. Those transplants aren't cheap. It can take a lot of searching the database under various key words, but there seems to be a clinical trial for everything these days. Try clinicaltrials.gov Good luck, > > >> > > >> Great job on the video Good luck, We have done stemcells with Mason and > > >> have seen some nice improvements. > > >> > > >> Rita > > >> > > >> > > >> In a message dated 9/13/2009 10:17:10 P.M. Eastern Daylight Time, > > >> thecammygirl@ writes: > > >> > > >> > > >> > > >> > > >> Hi all, > > >> > > >> Below is a link to a fundraiser video for my daughter - . > > >> > > >> It is titled 's Challenge > > >> > > >> _http://www.youtube.http://wwwhttp://www.yo_ > > >> (http://www.youtube.com/watch?v=7SoJ33RQzGM) > > >> > > >> We want her to have the stem cell transplant to give her brain a chance to > > >> heal, to give her a chance to talk, to be independent - Well, I'm > > >> preaching to the choir!! You all know what it is to hope. She is severely autistic, > > >> non-verbal, and has irretractable epilepsy. I want to do everything I can > > >> to heal her so that she won't ever be at the mercy of someone that doesn't > > >> care for her happiness like I do. > > >> > > >> The stem cell transplant is very expensive. As you all know, if everyone > > >> would help, it will make this possible. It is set up thru the National > > >> Transplant Assistance Fund so people can be assured their donation is being used > > >> on the transplant. > > >> > > >> Please help if you can and send the link to your friends and family to > > >> give them the opportunity to help too. > > >> > > >> Best of luck to all of you and the challenges you face everyday too!! > > >> > > >> National Transplant Assistance Fund > > >> www.transplantfund.www > > >> In Honor of Moreno > > >> 150 N. Radnor Chester Road; Ste F-120 > > >> Radnor, PA 19087 > > >> 1.800.642.8399 > > >> > > >> Sincerely, > > >> Cammy > > >> _http://www.youtube.http://wwwhttp://www.yo_ > > >> (http://www.youtube.com/watch?v=7SoJ33RQzGM) > > >> > > >> (or search YouTube for epilepsy + stem cell transplant and then look for > > >> 's Challenge.) > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Cammy-Under EPSDT you don't have to wait until something becomes standard of care before Medicaid is required to cover it. That's why the whole purpose of EPSDT is to empower parents to discover interventions to help their children so that those discoveries can in turn then be utilized to help similar children. Therefore, EPSDT's purpose is to acquire something akin to stem cells. DF [ ] Re: 's Challenge > >Hi , > >The US is so far behind in stem cell research that my child will be an old lady before it is an approved treatment in the US. > > is quickly changing into an adult and I am facing difficulties I don't want to think about. I want to help her - that's all. > >Thx, >Cammy Freels http://www.davidfreels.com mailto:david@... 404-725-4520 Quote Link to comment Share on other sites More sharing options...
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