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Amanda started the topic ALS TRIVIA – – "Stephen Hawking" Did you know? in the forum ALS Awareness Month 1 month ago
Stephen Hawking was the longest-living pALS (8 January 1942 – 14 March 2018). In 1963, at age 21, Hawking was diagnosed with an early-onset slow-progressing form of motor neuron disease that gradually, over decades, paralyzed him. He continued to make significant contributions to our world. He contributed numerous discoveries in the field o…[Read more]
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Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 1 month ago
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]
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Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 1 month ago
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]
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Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 1 month ago
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]
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Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 1 month ago
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] -
Amanda replied to the topic Increase awareness of ALS by getting a temporary tattoo (oh my!) in the forum ALS Awareness Month 1 month ago
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!
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Amanda replied to the topic FDA approves tofersen, now Qalsody, as treatment for SOD1-ALS in the forum Research Topics 1 month, 1 week ago
Other than going through your doctor I’m not sure. Hopefully someone from the forum will chime in!
Amanda
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Amanda started the topic Trying new things in the forum Living With ALS 1 month, 1 week ago
Life with ALS is hard and monotonous. Let’s shake things up a bit!
Pick something uncharacteristically you and dive in!! Something you want to do differently or something new you want to try. Try it and let us know how it goes. It can be anything from trying a new food, accommodation, a hobby, destination, clothing, something funny, ser…[Read more]
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Amanda started the topic ABOUT THE FIGHT ALS FILM FEST in the forum ALS Awareness Month 1 month, 1 week ago
Here is an interesting and fun way to participate in ALS Awareness Month!!
https://www.als.net/alsfilmfest
“ABOUT THE FIGHT ALS FILM FEST
This ALS Awareness Month, join us for a panel discussion on these incredible ALS films. This series is being hosted by The ALS Therapy Development Institute (ALS TDI), Her ALS Story and BrainStorm Cell Th…[Read more] -
Amanda replied to the topic Are you gearing up for ALS awareness month? in the forum ALS Awareness Month 1 month, 1 week ago
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]
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Amanda replied to the topic Information About Early Access in the forum Living With ALS 1 month, 1 week ago
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]
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Amanda replied to the topic Information About Early Access in the forum Living With ALS 1 month, 1 week ago
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]
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Amanda replied to the topic FDA approves tofersen, now Qalsody, as treatment for SOD1-ALS in the forum Research Topics 1 month, 1 week ago
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]
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Amanda started the topic Information About Early Access in the forum Living With ALS 1 month, 1 week ago
Since December 2, when I was diagnosed I have been trying to manage the process of applying for early access to Tofersen. Right after my diagnosis, the FDA delayed the decision. I was expecting the process to take a month to a month and half. It was more like 4 months and just when I was expecting to get access, Biogen put all early access a…[Read more]
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Amanda replied to the topic FDA approves tofersen, now Qalsody, as treatment for SOD1-ALS in the forum Research Topics 1 month, 1 week ago
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.
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Amanda replied to the topic FDA approves tofersen, now Qalsody, as treatment for SOD1-ALS in the forum Research Topics 1 month, 1 week ago
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]
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Amanda started the topic Are you gearing up for ALS awareness month? in the forum ALS Awareness Month 1 month, 2 weeks ago
Every May is ALS Awareness Month, and ALS News Today makes a point of participating. This is a chance for our community to be heard!
Do you have any ideas or suggestions for ALS Awareness Month? Do you participate in any in-person or virtual events?
Do you raise funds or awareness? How so?
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Amanda replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 1 month, 2 weeks ago
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]
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Amanda replied to the topic Have you applied for access to experimental treatments? in the forum Research Topics 1 month, 2 weeks ago
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
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Amanda started the topic Have you applied for access to experimental treatments? in the forum Research Topics 1 month, 3 weeks ago
There are a number of laws that support helping people with rare and terminal illnesses access experimental treatments. One law states that the FDA will review applications and make decisions within 30 days.
Have you applied for compassion care or early access? What was your experience like? What obstacles did you…[Read more]
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