Post by David Feder on Feb 11, 2009 12:40:22 GMT -5
Most researchers live in a world different of our. I want to participate in World Congress of muscles and try to show the indignation of the parents with the delay of researchs; also want to present the petition of PTC124. The intention is to show that parents sponsor many research studies and receive little in return and that the majority adopts treatments not recommended by their doctors. For this I need the cooperation of all that want to provide me the following information (only DMD in this moment):
Name of child / adult with DMD:
Current age:
City - state and country :
Wheelchair: yes or no
Respiratory dysfunction: yes - no - I do not know
Heart disease: yes - no - I do not know
BiPAP: yes or no
tracheostomy: yes or no
Osteoporosis: yes - no - I do not know
physiotherapy: yes or no
corticosteroids: yes or no
which corticosteroid and the dose: prednisone, prednisolone or deflazacort and dose
all medications prescribed by the doctor and the dose:
all noprescriptions medication or supplements and the dose:
The individual information shall not be disclosed and would like to send this information to my email: feder2005@gmail.com
Name of child / adult with DMD:
Current age:
City - state and country :
Wheelchair: yes or no
Respiratory dysfunction: yes - no - I do not know
Heart disease: yes - no - I do not know
BiPAP: yes or no
tracheostomy: yes or no
Osteoporosis: yes - no - I do not know
physiotherapy: yes or no
corticosteroids: yes or no
which corticosteroid and the dose: prednisone, prednisolone or deflazacort and dose
all medications prescribed by the doctor and the dose:
all noprescriptions medication or supplements and the dose:
The individual information shall not be disclosed and would like to send this information to my email: feder2005@gmail.com