READ THIS "PINNED POST" BEFORE YOU READ ANYTHING ELSE! [PLEASE]
We hope you will both enjoy and benefit from this group on [understandable] research advances in Motor Neuron Disorders (with a primary emphasis on PLS, HSP/SP, and ALS). This group will post new research on three main motor neuron disorders (Spastic Paraplegia, Primary Lateral Sclerosis, and Amyotrophic Lateral Sclerosis). In the recent past, these three were investigated separately but newer research has begun to see they are inter-related. This is a place to keep up on the newest research as we all wait for treatments beyond symptom relief to emerge.
From time to time, we will also post information on other neurodegenerative conditions (like Parkinson’s or Alzheimer’s) if the research is relevant and on other motor neuron disorders (like Spinal Muscular Atrophy or Progressive Bulbar Palsy, for example). We will try to keep a good mix of plain language and “easier to understand” research articles as there is no point in banging our heads against the wall (which could make us worse) attempting to understand articles that may as well be written in Greek.
Several requests:
1) Some of the research that is posted will need to be sent to you in pdf form in order for you to read the entire article. To keep things straight, we are going to use a KEYWORD to identify the article so either of us can send it to you. So.
a. We need you to comment that you want the article AND type the KEYWORD in your comment. For example: “Please send me the TRIGGER article”. That way we can get the precise article you want and quickly.
b. Similarly, if you want the article via email rather than Messages in Facebook, send us your email address AND the KEYWORD.
c. Then—once we send it to you, either Lisa Dang or I will ‘like’ your request. Once you see we’ve ‘liked’ it, check Messages (both RECENT and MESSAGE REQUEST folders) or email. Sounds complicated but should work well once we are on a roll. Do not block either of the admins. If you do, we cannot send you anything and you cannot see our posts. If you feel a need to block either of us, perhaps you would be happier leaving the group.
d. PLEASE do not request articles to send to others. Lisa Dang (as my proxy) and I are the only ones who can send these articles out under the fair use copyright law which clearly states "one copy for PERSONAL use".
If you send these to other people, you risk this group shutting down and (now that this notice has been posted) if you send the PDFs to others, you will be removed from the group. If there are others who would like these resources, just tell them to join this group. When you take it on yourself to share the pdf's, you are doing so in violation of fair use copyright law.
If you send these to other people, you risk this group shutting down and (now that this notice has been posted) if you send the PDFs to others, you will be removed from the group. If there are others who would like these resources, just tell them to join this group. When you take it on yourself to share the pdf's, you are doing so in violation of fair use copyright law.
2) Please do not post memes, inspirational quotes, personal blog post links, go fund me requests, events, petitions of ANY kind, or jokes. We want to keep this group focused on research that brings us hope and keeps us informed of progress.
3) This is not primarily a support group although we can and will be supportive. This is an educational group with a focus on helping each other understand the research and how it could benefit us. We are fortunate to have members with expertise in many different areas and if we work together—we can understand a lot. So don’t just ‘like’ posts. Talk to us!!!
a. If you have symptoms that are frightening or disturbing to you—we are going to refer you to your physician. While some here are physicians—they cannot diagnose you OR treat you over the internet. The rest of us are not physicians and so we cannot diagnose you OR treat you (over the internet or otherwise). This may sound uncaring—but, in truth, we want you to have good medical treatment—not wrong advice grounded in good intentions but with lack of knowledge about your condition.
b. Similarly, we cannot give you medical advice. We do understand that this stuff can be scary but we cannot know what will help you. We can tell you what has helped us but that is information only and not medical advice. If we see people dispensing medical advice or questioning the validity of anyone else's diagnosis, they will get one warning to stop it and their comments will be removed. If they persist, they will be removed from the group. This is the only way we know to not allow a group to be ruined for the many by one or two.
4) If there are areas related to Motor Neuron Disorders you’d like investigated, please post and ask. This recently happened with a post that mentioned mitochondrial issues and so we’ll be watching for items that describe the mitochondrial “stuff” in an understandable way. If there are subjects like that about which you want to learn more, please ask for information. Think of this group as a research and news clipping service on Motor Neuron Disorders (primarily PLS, SP/HSP and ALS).
5) NO SALES. None. No direct advertisement and no coy "contact me if you want information on how I cured this symptom/condition". Period. This is a group for people with motor neuron disorders to learn about news and research. If you are contacted by ANYONE in this group who wants to sell you ANYTHING--please let Lisa Dang or Rita Handrich know and we will IMMEDIATELY remove them. This is not negotiable.
6) NO HARASSMENT. None. If someone is contacting you via PMs from this group and you do not wish to hear from them but they persist in PMing you--again, let us know. This group is meant as a safe haven from some of the more negative aspects of Facebook groups. If they will not leave you alone--send us the PMs and they will be removed from the group.
7) The expectation in this group is for civil and respectful discussion even in disagreement. Group members who insult, harass, or make fun of others (including the group administrators) in either posts or PMs will be warned privately and the uncivil comment will be deleted. If there is a second incident, the group member will be removed from the group. This is done in order to keep the group emotionally 'safe' for all group members.
8) And finally, you can search the group for information to see if anything has been posted on your area of concern/curiosity. There is a search box on the right hand side of the group page, just under the logo. Type what you want to know in that box (like ALS, PLS, HSP/SP, yoga, exercise, balance, stretching, Genetics 101, clinical trials, support groups, medical marijuana, high CBD, worldwide directory, et cetera). Here’s a picture to help you locate the search box.
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HICKOK
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