Aa
Putting a face on MS
Justine, at the Myelin Repair foundation, has come up with another patient centered approach to all those scientists they work with - I hope you will read her request here and contact her to help .... this would be the closest most of us will ever come to having our faces on trading cards! LOL
FROM JUSTINE : "we're starting to organize for an upcoming health care technology confererence called BIL-PIL. At this event, we want to remind the attendees/innovators about the real focus of the event, not the technology, but the people that it should serve.
In that vein, we are creating Patient Cards to give to each attendee as they enter the conference. Here's more information:
MRF President Scott Johnson will be speaking at the BIL/PIL 2009 Conference in San Diego, CA at the end of October.
BIL/PIL focuses on big ideas everywhere along the healthcare continuum: from medical research to preventative medicine, to patient care, patient records and more.
The MRF wants to contribute more to BIL/PIL than Scott’s talk on how the MRF is accelerating medical research and the delivery of patient treatments. We want to remind the BIL/PIL conference attendees that the new ideas they are exploring in health and health care, in the end, will matter more to patients than anyone else. Especially those living with chronic diseases for which there are few, if any, effective treatments or cures.
So we had an idea. We want to create and handout P-Cards — Patient Cards — one card to each attendee that shows information about an individual person: his or her medical conditions, symptoms, medications or treatments (if there are any) and a photo. We hope these cards will motivate attendees to share their most thoughtful ideas for how together we can promote innovation in health and health care.
But we can’t make P-cards without your help! Send us your suggestions of who should be on a P-card – it can be you or someone you know (with their permission). We are aiming to create 300 of these P-cards by BIL/PIL’s launch at the end of October.
We will use your info to create a customized P-Card with your information and put your card in the hands of someone at BIL/PIL."
FROM ME:
There was a form attached to the email I got from Justine, but I have to use the web address - here it is:
http://spreadsheets.google.com/viewform?hl=en&formkey=dFg0T092bGtYOTZkenBVd3E4MmlLN1E6MA
If you can't get this to work, or I get bleeped by the c ensor, or you would like more information, you can contact Justine directly...
justine (at) myelinrepair (dot) org
Use the symbols for at and dot to get the correct address.
I hope some of you will participate in this project - its a great idea to personalize this disease.
my best,
Lulu
FROM JUSTINE : "we're starting to organize for an upcoming health care technology confererence called BIL-PIL. At this event, we want to remind the attendees/innovators about the real focus of the event, not the technology, but the people that it should serve.
In that vein, we are creating Patient Cards to give to each attendee as they enter the conference. Here's more information:
MRF President Scott Johnson will be speaking at the BIL/PIL 2009 Conference in San Diego, CA at the end of October.
BIL/PIL focuses on big ideas everywhere along the healthcare continuum: from medical research to preventative medicine, to patient care, patient records and more.
The MRF wants to contribute more to BIL/PIL than Scott’s talk on how the MRF is accelerating medical research and the delivery of patient treatments. We want to remind the BIL/PIL conference attendees that the new ideas they are exploring in health and health care, in the end, will matter more to patients than anyone else. Especially those living with chronic diseases for which there are few, if any, effective treatments or cures.
So we had an idea. We want to create and handout P-Cards — Patient Cards — one card to each attendee that shows information about an individual person: his or her medical conditions, symptoms, medications or treatments (if there are any) and a photo. We hope these cards will motivate attendees to share their most thoughtful ideas for how together we can promote innovation in health and health care.
But we can’t make P-cards without your help! Send us your suggestions of who should be on a P-card – it can be you or someone you know (with their permission). We are aiming to create 300 of these P-cards by BIL/PIL’s launch at the end of October.
We will use your info to create a customized P-Card with your information and put your card in the hands of someone at BIL/PIL."
FROM ME:
There was a form attached to the email I got from Justine, but I have to use the web address - here it is:
http://spreadsheets.google.com/viewform?hl=en&formkey=dFg0T092bGtYOTZkenBVd3E4MmlLN1E6MA
If you can't get this to work, or I get bleeped by the c ensor, or you would like more information, you can contact Justine directly...
justine (at) myelinrepair (dot) org
Use the symbols for at and dot to get the correct address.
I hope some of you will participate in this project - its a great idea to personalize this disease.
my best,
Lulu
I got a thank you today from them for taking the time to fill out the form and send in a head shot.
LA
LA
Thanks so much for posting my message LuLu.
Also thanks for sending in your form LATW!
Also thanks for sending in your form LATW!
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