ALS News Today Forums » All Replies https://alsnewstoday.com/forums/forums/feed/ Fri, 24 May 2024 04:24:42 -0500 http://bbpress.org/?v=2.5.14-6684 en-US https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25543 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25543 Thu, 23 May 2024 23:56:58 +0000 Sylvia Daniellem can you share your results to date?

]]> https://alsnewstoday.com/forums/forums/topic/dry-mouth/#post-25542 <![CDATA[Dry mouth]]> https://alsnewstoday.com/forums/forums/topic/dry-mouth/#post-25542 Thu, 23 May 2024 22:02:59 +0000 luna My husband was diagnosed with Bulbar ALS seven months ago. He struggles with dry mouth and tongue at night when trying to sleep (but has excess saliva in the daytime). He has tried various sprays and gels at night but has very little relief. Do other folks with ALS have this dry mouth/tongue issue at night? Thanks.

]]> https://alsnewstoday.com/forums/forums/topic/the-best-resources-for-finding-an-als-drug-trial-and-als-research-opportunities-als-awareness-month-2024/#post-25541 <![CDATA[Reply To: The best resources for finding an ALS drug trial and ALS research opportunities – – ALS Awareness Month 2024]]> https://alsnewstoday.com/forums/forums/topic/the-best-resources-for-finding-an-als-drug-trial-and-als-research-opportunities-als-awareness-month-2024/#post-25541 Thu, 23 May 2024 19:36:12 +0000 Greg Herrin https://www.massgeneral.org/neurology/als/research/platform-trial Massachusetts General Hospital Healey ALS Platform Trial

massgeneral.org

HEALEY ALS Platform Trial

Borrowing from successes in cancer drug development, the Healey Center and NEALS faculty are leading the first ALS Platform Trial.

]]> https://alsnewstoday.com/forums/forums/topic/the-best-resources-for-finding-an-als-drug-trial-and-als-research-opportunities-als-awareness-month-2024/#post-25540 <![CDATA[Reply To: The best resources for finding an ALS drug trial and ALS research opportunities – – ALS Awareness Month 2024]]> https://alsnewstoday.com/forums/forums/topic/the-best-resources-for-finding-an-als-drug-trial-and-als-research-opportunities-als-awareness-month-2024/#post-25540 Thu, 23 May 2024 17:19:53 +0000 Dagmar This is a great and comprehensive list! I recommend our members bookmark this post so that they can come back and refer to it all year long.

Big thanks Amanda, for compiling this list!

]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25539 <![CDATA[Reply To: Fatigue Post Physical Activity]]> https://alsnewstoday.com/forums/forums/topic/fatigue-post-physical-activity/#post-25539 Thu, 23 May 2024 17:11:09 +0000 Dagmar Sounds like you’ve found a good strategy to follow and it is working for you. 🙂

]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25538 <![CDATA[Reply To: Activity induced]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25538 Thu, 23 May 2024 17:08:18 +0000 Dagmar I know of one study that pointed to genetic ALS being triggered by strenuous exercise. But not with sporadic. After ALS diagnosis, both genetic and sporadic benefitted from daily exercise.

]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25537 <![CDATA[Reply To: Activity induced]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25537 Thu, 23 May 2024 17:05:49 +0000 Dagmar I believe that because the sports figures who have ALS are so highly public, we associate their sport as having caused their condition. There have been many studies but no direct link found as of yet – – only assumptions.

]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25536 <![CDATA[Reply To: Activity induced]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25536 Thu, 23 May 2024 17:03:13 +0000 Dagmar I agree.

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25535 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25535 Thu, 23 May 2024 15:25:08 +0000 NJGuy Hi Leonard,

Glad to know your wife responded well to the CNM-AU8. I would also like to get this medicine and I am 36 months+ after diagnosis. You mentioned this is available from NOVA in Davie, FL. Is there any email or phone number you can share which can help me obtain this medicine?

I believe CNM-AU8 is a gold nanoparticle suspension, there are some brands on Amazon which offer similar gold suspension. Has anybody tried a similar alternate option? Please share your experience.

Thanks & best regards,

Njguy

]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25534 <![CDATA[Reply To: Activity induced]]> https://alsnewstoday.com/forums/forums/topic/activity-induced/#post-25534 Thu, 23 May 2024 03:54:14 +0000 Funky I inherited the gene TBK1 which causes ALS and/or FTD. My mother and 3 of her 4 siblings died of FTDementia. They all lived sedentary lives whereas I was very active throughout my life with hiking, skiing, mountain climbing, and windsurfing. I have ALS. In a webinar, a researcher discussed this possibility that activity tilted the disease to ALS.

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