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edjohnson

Active member
Joined
Nov 18, 2011
Messages
48
Reason
PALS
Diagnosis
10/2011
Country
US
State
nc
City
emerald isle
Quote from a recent patient email.

We hope that comments such as this one will be posted on PLM as well as a new Patient Managed Google group site which will contain more in-depth information and discussion. So far only 20 + patients have received treatment. Many patients may be intimidated by the complexity of the PLM input process, it is fairly complicated, does not allow for opt out on some of the questions, requires computer skills and time to keep charts updated.

At some point PLM might decide to put up a simpler version that allows for less depth. Kind of a USA Today version for the masses, instead of a Research Journal /Database for the PhD's

"i recieved my treatment on dec 3rd. amazingly 4 short days later my toes on my left foot began to move more,i only had about a 1/4 inch of movement prior to the treatment,now it has been almost a month and i have 3/4 inch of movement. my doctor at UAB in birmingham al. says there is no cure for als. im just waiting until my next visit with him in march to see the look on his face! lol. dr. williams has really given me hope! tks. for your work on this,please let me know if i can help."
 
Thanks for your courage to participate in the study.
 
We are attempting to engage Dr. Williams patients in an effort to support his new research which as you may know will include gene therapy.
Our approach is to elicit comments from his patients in an effort to provide information that will help new potential patients, and aid In raising funds for his next generation approach.

BTW, here is our volunteer group ALSTUN (ALS treat us now) that we Established about a year ago To help with What the ALSA was unwilling to do.
 
many new patients have been treated, more are hoping to be treated. Next generation therapy research is well underway.
 
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