Stem Cells for hearing loss live chat tonight, November 19, 2009!
- Thread starter Technocracy
- Start date
Hearing Loss Association
This comes from HLAA formerly SHHH Self Help for the Hard of Hearing. They have done a lot of good things to help the hearing impaired.
However, I asked them a few months ago what there policy was on supporting stem cell treatment here in the US. They never responded. A group this big and influential could really help our cause. IMHO They could really help a lot of hearing impaired and late deafned people by focusing on bring safe stem cell treatments here instead of wasting their time supporting or lobbying for RESEARCH. I'm disappointed that they don't take a firmer stand in this regard. As many of you know I am in the process of possibly going abroad to get treatment for my severe sensoryneural hearing loss. HLAA if you read this let us know you want to help by supporting safe stem use in the US.
www.safestemcells.org
This comes from HLAA formerly SHHH Self Help for the Hard of Hearing. They have done a lot of good things to help the hearing impaired.
However, I asked them a few months ago what there policy was on supporting stem cell treatment here in the US. They never responded. A group this big and influential could really help our cause. IMHO They could really help a lot of hearing impaired and late deafned people by focusing on bring safe stem cell treatments here instead of wasting their time supporting or lobbying for RESEARCH. I'm disappointed that they don't take a firmer stand in this regard. As many of you know I am in the process of possibly going abroad to get treatment for my severe sensoryneural hearing loss. HLAA if you read this let us know you want to help by supporting safe stem use in the US.
www.safestemcells.org
Technocracy
Member
Cynthia
Your point is shared by many of us. Too much emphasis is placed on feel good ideas and petitioning the government to help those with illnesses.
The focus should be on finding cures, yet many research grants don't even attempt to seek cures for anything. For example, there is a clinical trial going on right now for COPD that will measure how far a patient can walk if they exercise opposed to if they don't. I'm not sure this is very helpful to those who are dying every day from COPD.
As far as the government helping any of us...well that's simply laughable.
Your point is shared by many of us. Too much emphasis is placed on feel good ideas and petitioning the government to help those with illnesses.
The focus should be on finding cures, yet many research grants don't even attempt to seek cures for anything. For example, there is a clinical trial going on right now for COPD that will measure how far a patient can walk if they exercise opposed to if they don't. I'm not sure this is very helpful to those who are dying every day from COPD.
As far as the government helping any of us...well that's simply laughable.
Cyndi - You can make comments on the HLAA site. This would be an excellent opportunity to get the word out about www.safestemcells.org
This comes from HLAA formerly SHHH Self Help for the Hard of Hearing. They have done a lot of good things to help the hearing impaired.
However, I asked them a few months ago what there policy was on supporting stem cell treatment here in the US. They never responded. A group this big and influential could really help our cause. IMHO They could really help a lot of hearing impaired and late deafned people by focusing on bring safe stem cell treatments here instead of wasting their time supporting or lobbying for RESEARCH. I'm disappointed that they don't take a firmer stand in this regard. As many of you know I am in the process of possibly going abroad to get treatment for my severe sensoryneural hearing loss. HLAA if you read this let us know you want to help by supporting safe stem use in the US.
www.safestemcells.org
I also am traveling to another country to get stem cells for my deafness. Thought you were waiting for stem cell clinical trials in the USA so you can get into one?
Good for you! Be sure to share your experience with all of us.
I never said I was waiting for clinical trial in the US. Please don't make me laugh!! Why waste my time on a clinical when I can go get treatment today? I will be going straight for the treatment. I'll let you know how it goes etc.
I never said I was waiting for clinical trial in the US. Please don't make me laugh!! Why waste my time on a clinical when I can go get treatment today? I will be going straight for the treatment. I'll let you know how it goes etc.
http://www.stemcellpioneers.com/showthread.php?t=2225&page=2Good for you! Be sure to share your experience with all of us.
I never said I was waiting for clinical trial in the US. Please don't make me laugh!! Why waste my time on a clinical when I can go get treatment today? I will be going straight for the treatment. I'll let you know how it goes etc.
This is what you said: "I understand your curiousity and No offense friend but this is too tiring to keep discussing my loss. If I ever get accepted into trial everything will be posted.
No, I am not willing to go to China and spend 30K only b/c I believe the treatment I am seeking is closer and less expensive. If that works for you then God bless you!"
I wanted to let you know ive been emailing stem cell centers. There's the Nepsis center just across California that I am considering. I can fly to San Diego and just across, is Nepsis. No need to travel outside USA. You are correct that there is a closer and cheaper center. It's not part of the USA trial, however as this center is based in Mexico. Is this stem cell center one of your choices as well? If so, when do you plan to travel there? I would like to travel there soon because it's half price for the pioneers. What have you learned about Nepsis that you can share here?
I also learned it will be 10-15 years before stem cells for deafness gets FDA approval in the USA. Many people won't wait this long, including me. I don't want a cochlear implant, not even if insurance pays because of the risks, because ill still be deaf, because I won't be able to get stem cells then and many other reasons. I am saving my ears for stem cells which im getting soon.
If you are interested, I would suggest that you fill out an application and let them know you are a Pioneer member. I think they are just looking for a few patients to get their pilot program for hearing loss going. I don't think you will find any information about it on their website, but I am sure they will be glad to quote you a price and see if you qualify. There should never be an obligation at any clinic to apply so you have nothing to lose by checking it out. I don't know any more about it or I would gladly tell you.