iconquerms - patient driven research

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pushingForward
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iconquerms - patient driven research

Post by pushingForward »

A couple of blogs I read (Wheelchair Kamikaze, ActiveMSers) recently posted on this new site aimed at unlocking the cure for MS via patient surveys. Seems like a neat idea and worth our time. Here is a link: https://www.iconquerms.org/
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euphoniaa
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Re: iconquerms - patient driven research

Post by euphoniaa »

Help!!! I'm trapped in that website where it seemed to take my email for registration, but won't send me a confirmation, and now it won't let me try again because MY E-MAIL IS ALREADY TAKEN and it wants to help me "remember my password" but I DIDN'T GET A CHANCE TO GIVE THEM A DAMN PASSWORD IN THE FIRST PLACE and they won't answer their phone and...

Sigh...I hate trying to register for things online.

BTW, the Accelerated Cure Project refused to take my blood samples years ago no matter how much I begged them. And I've got one of the most definite cases of MS my docs have seen. And my own MS Center is involved.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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euphoniaa
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Re: iconquerms - patient driven research

Post by euphoniaa »

Okay, I went back in and tried "Resetting Your Password" and they said they have now sent me an email to tell me how. Of course, I didn't get that e-mail either.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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NHE
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Re: iconquerms - patient driven research

Post by NHE »

euphoniaa wrote:Okay, I went back in and tried "Resetting Your Password" and they said they have now sent me an email to tell me how. Of course, I didn't get that e-mail either.
Check your spam filter. Note that your ISP may be using a spam filter in addition to anything that may be a part of your local email software. To check your ISP's spam filter, you'll likely need to log into your email account on their site.
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euphoniaa
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Re: iconquerms - patient driven research

Post by euphoniaa »

Whew, with friendly assistance from their support staff/tech people I managed to get in, register, and fill out the first surveys!

It seems like a valuable new resource to the MS community and I recommend it highly. I'm excited to be a part of the project. :-D Thanks, pushingforward, for posting the link here.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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