joe kelley

Dustin,

I’ve heard of Ketamine for Depression and related disorders, but not ALS. When I googled, there is a clinic in Florida that specifically states Ketamine treatment for people with ALS. BodyScience is also in Florida. Now I’m wondering if Florida laws are more lenient? I do know that Ketamine can help with depression and pain, so it…[Read more]

Brian, thank you for sharing. I hope that you understand mine and Dagmar’s role on the forum. We are both very dedicated and protective of our community. There are so many scams targeting pALS and other people with rare diseases, and most promise a magical cure that no one else knows about. Without research, and valid data and information, we…[Read more]

Brian,
Do you work for BodyScience? You said, “we’re working on this.” I can see if you are having positive results you are probably invested and have the desire to help others which we appreciate!

@ all forum members, As for a “cure,” I caution our forum members to do their research prior to getting treatment of any kind that is not from…[Read more]

Dagmar,
I asked the same question on a different thread and Brian pm’d me a phone number. I asked that he post the information (not the phone) number so that our members could see the source and research on their own. That was not done. I’m leary of this company. I have been doing research and if I learn anything that is documented by…[Read more]

I ordered mine and put the information on my FB page. A lot of my friends are in on this one!! Pictures coming when we do!

Other than going through your doctor I’m not sure.  Hopefully someone from the forum will chime in!

Amanda

Hello Rich,

I see more and more stories  in national and local news on ALS/MND and other neuromuscular diseases; especially when there is an advancement like Tofersen. Also, each time a celebrity or relative of a celebrity is diagnosed it also draws national attention.  Below are a few stories that aired on national news on several different n…[Read more]

Len,

Thank you so very much!!  I just talked to the local news station here in Fort Myers, WINK NEWS, and they are doing a story on ALS.  They are going to interview me next week.  I asked if they wanted to film my first procedure (I also had to ask my doctors if that was ok). The reporter sounded interested, but I don’t know when my tr…[Read more]

Hi James,

If you are applying for “Early Access/Compassionate Care” for an experimental treatment which is one that has not been FDA approved, the pharmaceutical company likely has an application. My doctor had to initiate the process. Biogen had an application that needed to be completed.

Many of pharmaceutical companies use a company to manage…[Read more]

Lisa,

Have you been in contact with University of Auckland?  If you are like me you have researched everything possible!  How did you find out you had the SOD1 mutation.  Were you not eligible because it wasn’t associated with a rapid progressive variant? I’m not as informed about sporadic ALS, but I do recall reading that many sporadic cases al…[Read more]

Biogen is stating they are trying to get QALSODY (Tofersen) out to physicians in a week.  Some places will need training on the treatment procedures and drug.  The University of Miami is setting up a “Tofersen” Clinic for treatments.

Lisa,
Don’t give up hope because the technology will be beneficial in finding treatments for ALS in general. I know they are already working on a similar treatment for the c9.

Have you been working with any of the doctors affiliated with the research centers? If not, reach out to them. I wasn’t a candidate for the Tofersen trials because the SOD1…[Read more]

Katie,

I love the spirit and meaning of “Striver!”  This thread is filled with so much thought provoking ideas. I’m so early into this journey, and I haven’t lost what I would consider to be any “Big” losses, yet.  I can still walk, talk, work….all of these adjectives overwhelm me to be honest.  Sometimes, I feel that this all isn’t real and ye…[Read more]

Utahna,

Have you talked to your doctors about trials?  Have you had genetic testing done that tells you is your ALS is sporadic or familial?  There is a government website that list clinical trials and I’m sure some of our members can make suggestions on places to contact to see if you are a candidate.

Amanda