Richard

Richard started the topic ALS – Explore ALS Clinical Research, Trials and Studies in the forum Research Topics 1 month, 3 weeks ago

ALS Signal is a page on the website I AM ALS, and is designed to provide helpful details about ongoing trials and ALS reseach.

Click here to Explore ALS Clinical Research, Trials and Studies

or, click here: https://iamals.org/get-help/als-signal-clinical-research-dashboard/

Richard

Did you find this site and the ALS Signal pa…[Read more]

Richard replied to the topic Are you Involved with ALS Advocacy? in the forum ALS Awareness and Advocacy 2 months ago

Yes, I think advocating for pALS is helpful. However, what people CAN do is very different from what people WILL do,

Before I mention my advocacy involvement I want to emphases my frustration with the ALS organizations and foundations which I feel are not leading the ALS advocacy charge. Let me give two examples of obvious failures on their…[Read more]

Amanda replied 2 months ago

Richard,
That’s a great letter and a great effort toward advocating!! Thank you for sharing your letter and for taking the time to fight for pALS.

Amanda

Richard replied to the topic Risk of Diseases Like ALS Almost 4 Times Higher in Professional Soccer in the forum ALS Awareness and Advocacy 2 months ago

I have not reached out to any Soccer organizations about the suggestion of having an ALS day for a famous soccer player. Since I have no clout, I did email the ALS Association about this topic. As I expected, I received no response from them.

If someone has more influence than I have, then I suggest they make an effort and take on the r…[Read more]

Richard started the topic Risk of Diseases Like ALS Almost 4 Times Higher in Professional Soccer in the forum ALS Awareness and Advocacy 2 months ago

Baseball has about 500 million fans worldwide and Major League Baseball finally had Lou Gehrig Day.

So here’s an idea…

Since the risk of ALS is almost 4 times higher in professional soccer players and soccer has over 3 billion fans worldwide, to raise awareness, how about selecting a soccer star with ALS and have a day for him?…[Read more]

Amanda replied 2 months ago

Good idea Richard. Have you contacted any of the national or international soccer associations and presented them with you ideas and thoughts?

Richard replied to the topic Key hallmark of ALS is successfully reversed in laboratory in the forum Research Topics 2 months, 1 week ago

Thanks Jean-Pierre, you answered my question.

Richard

Richard started the topic Key hallmark of ALS is successfully reversed in laboratory in the forum Research Topics 2 months, 1 week ago

Key hallmark of ALS is successfully reversed in laboratory

Scientists demonstrated how to reverse the incorrect localisation of three RNA-binding proteins in ALS, potentially leading to treatments.

Is this hopeful or just the same old hype that leads to treatment…[Read more]

Richard started the topic ALS Websites with Calendars of Events in the forum ALS Awareness and Advocacy 2 months, 1 week ago

Hi All,

Stay current with various ALS events and webinars using this website from I Am ALS.

Search the ALS Calendar for a Local or Virtual ALS Event

Richard

Dagmar Munn replied 2 months, 1 week ago

This is a good start for a resource – – I wish they listed more than just the events from NEALS, Healy Platform Trials, and the Sacramento ALS Support Group.

Does anyone know of other good compilations of worldwide ALS events and webinars? If you do, please list any in the comment section below.

Richard replied to the topic ALS Research Breakthrough? in the forum Research Topics 2 months, 2 weeks ago

If past history of so-called ALS treatment breakthroughs are any indication of any possible future ALS treatments, then this too will fizzy out into obscurity.

Richard

Richard replied to the topic The Waiting is the Hardest Part in the forum Diagnosis Information and General Questions 3 months, 1 week ago

Hi Amanda, my thoughts and prayers are with you and I’m sorry for what you are experiencing!

I agree with Debra Kaufman, record your sessions with your phone. I’ve been recording all my important interactions for years. Additionally, all my cell phone conversations are recorded. It’s been very beneficial to be able to go back and hear what w…[Read more]

Richard replied to the topic ALS – Clinical Trials – What’s Wrong With Them? How Would You Fix Them? in the forum Research Topics 3 months, 2 weeks ago

Hi David, your item #2 (run trials in parallel), I believe that is what the Healey Clinical Trials are doing, evaluating 4 drugs at once. See link:

https://www.massgeneral.org/neurology/als/research/platform-trial-news/

Richard

Richard replied to the topic ALS – Clinical Trials – What’s Wrong With Them? How Would You Fix Them? in the forum Research Topics 3 months, 3 weeks ago

Perfect John!!

Nothing changes if nothing changes.

Richard

Richard replied to the topic ALS – Clinical Trials – What’s Wrong With Them? How Would You Fix Them? in the forum Research Topics 3 months, 3 weeks ago

Hi John, hope you were able to access the iamals website so that you could enter your viewpoint.

Richard

Richard replied to the topic June 21 – Global ay of recognition of ALS/MNd in the forum ALS Awareness and Advocacy 3 months, 3 weeks ago

Hi Jim,

I’m little surprised that ALSNewsToday didn’t mention anything about June 21st being Global ALS day.

This omission makes me think that some of these ALS organizations work in a vacuum, not collaborating, sharing ideas and information. You need to learn from the mistakes of others, because you won’t live long enough to make them…[Read more]

Richard started the topic June 21 – Global ay of recognition of ALS/MNd in the forum ALS Awareness and Advocacy 3 months, 3 weeks ago

Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.

ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/…[Read more]

Richard started the topic ALS – Clinical Trials – What’s Wrong With Them? How Would You Fix Them? in the forum Research Topics 3 months, 3 weeks ago

Hi All,

You have the opportunity to express your opinions on how to fix ALS clinical trials

https://iamals.org/action/fix-the-als-clinical-trial-system/

Richard

Richard started the topic ALS – NEALS Educational Webinars for July – Registration and Archives in the forum Research Topics 3 months, 3 weeks ago

Hi All,

In partnership with The ALS Association, the Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) offers live webinars for people with ALS, caregivers, and the broader ALS community. Topics include updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments. The…[Read more]

Richard started the topic Motor neurons derived from patients point to new possible drug target for ALS in the forum Research Topics 4 months, 1 week ago

Hi All,

Researchers now report a high-throughput target and drug discovery platform using motor neurons made from ALS patients. Using the platform, they confirmed two known targets and identified an existing class of drugs — agonists to the dopamine D2 receptor — as potential novel…[Read more]

Richard started the topic ALS – Advocacy – You Can Help Make A Difference in the forum ALS Awareness and Advocacy 4 months, 1 week ago

Hi All, help make a difference in finding ALS treatments.

Ask Your Senators: Support New and Increased Funding for ALS Research

ALS champions in the U.S. Senate launched our annual ALS Appropriations Dear Colleague letter with the goal of enlisting their colleagues in our fight. Ask your senators to sign today!

Tell…[Read more]

Richard replied to the topic ALS – Take Action Website in the forum ALS Awareness and Advocacy 4 months, 1 week ago

Hi Jean, your effort is impressive! I’ve said this before in previous forum discussions that the definition of insanity is doing the same thing over and over again and expecting different results. Your Alzheimer statistics are very disappointing. Hopefully your perspective will lead to efforts with more promising outcomes. Keep up the grea…[Read more]