richardhasals
Forum Replies Created
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I get lots of emails from various ALS organizations about May being ALS awareness month.
However, in the past, CNN and Fox news carry no stories about May being ALS awareness month.
A greater effort needs to reach the non-ALS community about May being ALS awareness month. How about these various ALS organizations putting together a prepared write-up about ALS and distribute it to local and national news organizations.
Thanks, Rich
TA
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…and my opinions must differ from both yours and Dagmar’s opinions because my posts/replies don’t get posted or are deleted, with no explanation of why.
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Kathy, I agree with you 100 percent! I knew nothing about ALS until I was diagnosed. A greater effort in awareness is needed.
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However, it is pitiful that it took the Baseball profession 80 years to support ALS awareness in the name of Lou Gehrig. June 2nd 2022 should be the 81st recognition, not the 2nd.
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Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 31 2021.
Very disappointing results!
No major news outlets were listed in the first 5 search result pages. Just a lot of local outlets. Absent are CNN, NBC, ABC, CBS, OANN, Fox, Newsmax and all the major newspaper’s websites.
Those responsible for getting the word out are clearly failing. A new approach is necessary.
I’ve received lots of emails from ALS and neurological organizations about May being ALS Awareness month. The wrong people are being targeted. People with ALS already know about ALS. It’s the non-ALS community that needs the message being sent to them and that is where the major news outlets can help.
My friend and I had been emailing news organizations, philanthropists, foundations, political people and ALS organizations about ALS awareness. Below is an example of what an email can contain:
======= email start ======
Hi.
The month of May is ALS (Amyotrophic Lateral Sclerosis) Awareness Month.
Even though the month of May is over, any time is a good time to make others aware of ALS.
Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is no effective treatment for this deadly disease, no known cause, and currently no cure.
It would be tremendous if your website/newspaper made mention of ALS to your readers to stimulate more awareness, with any of the following information:
1. There are no known causes, no effective treatments or cure.
2. Motor Neuron Diseases such as ALS are increasing in the USA.
3. Only four states have declared May an ALS awareness month.
4. Raise awareness about the difficulties faced by ALS patients and their families.
5. Ask your Senators to support new and increased funding for ALS research.
6. Advance policies that improve the quality of life for ALS patients.
7. Expand the network of support for those suffering from ALS.
8. Advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure.
9. ALS research is underfunded.One of the biggest problems with the ALS awareness is that the non-ALS community does not get sufficiently informed. Emails do get sent out by different ALS and neurological organizations mentioning the challenges and lack of treatment options for ALS. However, the people receiving the emails already know about the suffering that comes with ALS. Due to the rarity of ALS and its deficient awareness, ALS patients and their caregivers sometimes refer to “ALS” as “A Lousy Sickness” or “A Lack of Support”.
It’s more important, it’s imperative to get the word out about the devastation of ALS to people unaware of ALS.
My hope is you will reach out to your audience and inform them of this terrible disease! You can truly save lives and ease the suffering of people by running a news story about ALS.
You can contact the following ALS organizations for more information about ALS:
The ALS Therapy Development Institute (ALS TDI)
The ALS Association
I Am ALS
Steve Gleason Foundation
The Les Turner ALS Foundation
North East ALS Consortium
MDA
ALSNewsToday
Thank you so much for your consideration and all my gratitude!
======= email end ======
Being an advocate for ALS can be frustrating when you feel that the leading ALS organizations show a lack of urgency.
What is the ALSNewsToday doing to promote advocacy?
For starters, ALSNewsToday can have a link on their home page on how to and ways to be an ALS advocate.
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I have general information about an ALS diagnosis…
Just a few thoughts about the post ALS diagnosis and working with your physician or ALS clinic:
1. Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
2. Be provided an ALS primer. ALS introduction paperwork or at least an identification of websites to go to (in a specific order), so to understand the disease, what to expect, medication, research being done, self-help, etc.
3. Obtain a second opinion or third, fourth, etc. if necessary.
4. Rule out any ALS mimicking diseases, such as Multifocal Motor Neuropathy.
5. Be given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t determine the decline progression. Update it daily.
6. Familiarize yourself with ALS initial and advanced symptoms.
7. Discuss the possibility of being prescribed Riluzole.
8. Discuss the possible need for Social Security Administration (SSA) Social Security Disability Insurance (SSDI)
a. If you’ve received a diagnosis of Amyotrophic Lateral Sclerosis, you qualify for the Social Security Administration’s Compassionate Allowances program.
b. Request guidance through the SSA SSDI and Medicare process
c. Discuss the possible need for supplemental insurance for prescriptions, vision and dental
9. Discuss the possible need for handicap parking and apply if applicable before it’s needed.
10. Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
11. Investigate technological options for communicating before the power of speech is altogether gone.
12. Consider your future housing needs.
13. Sign the AMX0035 fast-track petition, calling on the drug company and the FDA to make the treatment widely available as soon as possible.
14. Email your congressmen for ALS funding and treatment legislation.
15. Discuss with your physician any clinical trials being conducted. Working with your physician be presented with what is available and what would work best for you.
16. Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression.
17. Recommend to be questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. This should be part of physicians and clinics standard practice. Reason, from what I have read online sporadic ALS has unknown origins. Also, ALS progresses differently in different people. It would make sense that physicians and clinics obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
18. Sign up for PatientsLikeMe, a health information sharing website that helps people find new treatments, connect with others and take action to improve their outcomes.
19. Be aware of the “Right to Try” Act, which allows terminally ill patients access to experimental therapies that have completed Phase I testing but have not been approved by the Food and Drug Administration.
20. Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
21. Since there is currently no cure for ALS all therapeutic options should be explored with your physician or ALS clinic:
a. Get informed about Complementary and Alternative Medicine (CAM) or Alternative or Off-label Treatments (AOT). Even if you only benefit by the placebo effort, you’ll feel better and that’s what we’re all trying to achieve.
b. Discuss trying ALSUntangled recommended therapies. Therapies showing some benefit and are not ”we do not recommend” should be discussed with your physician as possible options.
22. Discuss being prescribed Radacava. -
Never!
The ALS associations responsible for getting-the-word-out about ALS are failing.
Richard
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Hi Maya,
Here is a brief video from Dr. Bedlack on ALS disease progression:
https://www.youtube.com/watch?v=a86zrvueaBo
See other short informative ALS videos at this location:
https://www.youtube.com/c/YourALSGuide
Richard
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Hi Carol,
My first symptom was right hand weakness in November 2019 and I was officially diagnosed with ALS in September 2020. Currently has spread to the right arm and left hand and arm.
My ALS ”support team” gave me no guidance or reference points. They basically just said that I have ALS and sent me on my way. So, for recently diagnosed people I like to send them some compiled information that I’ve gathered since my diagnosis. You may not need this information if you’re already working with a great team. Some of the information may be a little outdated, such as signing AMX0035.
Hopefully the forum members are giving you valuable, useful advice.
It’s better to light a candle than curse the darkness!
Rich
======== After Being Diagnosed With ALS ========
Just a few thoughts about the post ALS diagnosis and working with your physician or ALS clinic:
- Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
- Be provided an ALS primer. ALS introduction paperwork or at least an identification of websites to go to (in a specific order), so to understand the disease, what to expect, medication, research being done, self-help, etc.
- Obtain a second opinion or third, fourth, etc. if necessary.
- Rule out any ALS mimicking diseases, such as Multifocal Motor Neuropathy.
- Be given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t determine the decline progression. Update it daily.
- Familiarize yourself with ALS initial and advanced symptoms.
- Discuss the possibility of being prescribed Riluzole.
- Discuss the possible need for Social Security Administration (SSA) Social Security Disability Insurance (SSDI)
a. If you’ve received a diagnosis of Amyotrophic Lateral Sclerosis, you qualify for the Social Security Administration’s Compassionate Allowances program.
b. Request guidance through the SSA SSDI and Medicare process
c. Discuss the possible need for supplemental insurance for prescriptions, vision and dental - Discuss the possible need for handicap parking and apply if applicable before it’s needed.
- Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
- Investigate technological options for communicating before the power of speech is altogether gone.
- Consider your future housing needs.
- Sign the AMX0035 fast-track petition, calling on the drug company and the FDA to make the treatment widely available as soon as possible.
- Email your congressmen for ALS funding and treatment legislation.
- Discuss with your physician any clinical trials being conducted. Working with your physician be presented with what is available and what would work best for you.
- Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression.
- Recommend to be questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. This should be part of physicians and clinics standard practice. Reason, from what I have read online sporadic ALS has unknown origins. Also, ALS progresses differently in different people. It would make sense that physicians and clinics obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
- Sign up for PatientsLikeMe, a health information sharing website that helps people find new treatments, connect with others and take action to improve their outcomes.
- Be aware of the “Right to Try” Act, which allows terminally ill patients access to experimental therapies that have completed Phase I testing but have not been approved by the Food and Drug Administration.
- Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
- Since there is currently no cure for ALS all therapeutic options should be explored with your physician or ALS clinic:
- Get informed about Complementary and Alternative Medicine (CAM) or Alternative or Off-label Treatments (AOT). Even if you only benefit by the placebo effort, you’ll feel better and that’s what we’re all trying to achieve.
- Discuss trying ALSUntangled recommended therapies. Therapies showing some benefit and are not ”we do not recommend” should be discussed with your physician as possible options.
- Discuss being prescribed Radacava.
======== Websites of Interest ========
/======== ALS Facts ========/
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-lateral-Sclerosis-ALS-Fact-Sheet
ALS Fact SheetFrequently asked questions about ALS
A series of checklists with questions to ask your care teams to help get you started.
/======== Symptom Checkers ========/
https://symptomchecker.isabelhealthcare.com/
Isabel – The Symptom Checker doctors use and trust. Developed, refined and tested over 20 years using Artificial Intelligence technologies.http://www.symcat.com/
A disease calculator that uses hundreds of thousands of patient records to estimate probability of disease. You may have heard of Watson by IBM, which illustrates a trend of computing and predictive analytics in healthcare. We strive to empower people and medical professionals by placing the state-of-the-art in computer diagnosis at their fingertips.https://www.everydayhealth.com/symptom-checker/
Everyday Health symptom checker/======== Functional Rating Scales ========/
https://www.outcomes-umassmed.org/ALS/alsscale.aspx
ALS Functional Rating Scalehttps://www.mdcalc.com/revised-amyotrophic-lateral-sclerosis-functional-rating-scale-alsfrs-r#use-cases
ALS Revised Functional Rating Scalehttps://med.emory.edu/departments/neurology/programs_centers/emory_als_center/_documents/roads.pdf
Rasch Overall ALS Disability Scale (ROADS)/======== Latest ALS News ========/
http://www.ALSNewsToday.com
ALS News Today is strictly a news and information website about the disease.http://www.als.net
Latest ALS research newshttps://www.sciencedaily.com/news/health_medicine/amyotrophic_lateral_sclerosis/
Your source for the latest ALS research newshttps://www.news-medical.net/?tag=/Amyotrophic-Lateral-Sclerosis-(ALS)
Puts ALS medical and life sciences information in reach of people that can make a difference.https://www.answerals.org/news/
A global project dedicated to developing and implementing a unified strategy to stop Amyotrophic Lateral Sclerosis (ALS) through an aggressively funded agenda.The aim of ALStreatment.com is to offer a comprehensive resource of information about Amyotrophic Lateral Sclerosis, including its causes, associated symptoms and current available treatments which can help slow down the progression of the disease.
https://www.connectingals.org/
https://www.connectingals.org/episodes
Connecting ALS is a weekly podcast produced by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.https://www.tandfonline.com/toc/iafd20/0/0
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration publishes research into motor neuron diseases, covering all aspect of ALS and frontotemporal dementia.
https://www.nature.com/subjects/amyotrophic-lateral-sclerosis
Nature Portfolio latest research and reviews
https://lesturnerals.org/als-news-and-resources/
Advance scientific research into the causes, treatments and prevention of ALS. Provide exceptional clinical care and support services to people living with ALS, their families and caregivers. Increase awareness and education of ALS.
https://pubmed.ncbi.nlm.nih.gov/?term=amyotrophic+lateral+sclerosis&sort=date
National Library of Medicine
/======== Forums, Information, Support and Resource Sharing ========/
http://www.patientslikeme.com
A health information sharing website for patients. Giving patients the opportunity to share both personal stories and health data about your conditions to help uncover great ideas and new knowledge. By sharing information, you can put your disease experiences in context and find answers to the questions you have.http://www.iamALS.org
Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers and offering vital resources for people impacted by ALS.http://www.yourALSGuide.com
Website helps answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.https://www.youralsguide.com/resource-list.html
ALS support and resource listhttps://www.cdc.gov/als/Default.html
National ALS Registry offers the chance to participate in research and be counted.https://www.everythingals.org/
EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts — from care to cure — for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies.https://alsone.org/
ALS ONE is an unprecedented partnership of world leaders in ALS research and care who have joined forces to help cut bureaucratic red tape to combat the disease more efficiently and effectively for all.https://www.facebook.com/groups/NOMOREEXCUSESALS
Highly focused on a critical ALS issue of not enough transparency in ALS, as well as our original mission of course- gaining ACCESS as soon as possible to at least three or FOUR critical new ALS therapies that could be saving lives now! We are the original “rock throwing” ALS group that began the ALS advocacy revolution in February of 2019!
/======== Clinical Trials, Alternative Treatments and Self Help ========/
http://www.neals.org
Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.https://www.massgeneral.org/neurology/als/
https://www.massgeneral.org/neurology/als/news/all
The Healey Center for ALS is on a quest to discover life-saving therapies for people worldwide who are affected by amyotrophic lateral sclerosis (ALS).http://www.ALSUntangled.com
Reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them.Living with ALS – as a patient, caregiver or loved one – can feel overwhelming and isolating. From this moment on, know that you are not alone. Wherever you are and whatever you encounter you can find critical resources you need here.
Educate people diagnosed with ALS (PALS) and families about holistic protocols that can slow, stop and even reverse ALS progression. Change Standard of Care for all ALS patients to include nutritional testing, gut and liver function testing and toxin testing, as well as appropriate treatment to correct these.
https://iamals.org/get-help/als-signal-clinical-research-dashboard/
Clinical Trial Dashboard Introductory Videohttps://www.neals.org/als-trials/als-clinical-research/what-is-a-clinical-trial-and-why-are-they-necessary-for-als
Clinical Trial 101https://www.als.net/als-research/als-clinical-trials/
ALS.net TDI clinical trial pagehttps://www.fda.gov/news-events/public-health-focus/expanded-access
Expanded Access – potential pathway for a patient with an immediately life-threatening condition or serious disease or condition to gain access to an investigational medical product (drug, biologic, or medical device) for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available.
<p style=”margin: 0in;”>https://augiesquest.org/news/clinicaltrials/</p>
<p style=”margin: 0in;”>Navigating clinical trials</p>
/======== Foundations, Organizations and Research ========/
http://www.alsfoundation.org/
The ALS Foundation goal is improve the quality of life for those living with ALS and to do whatever they can to ease the physical, emotional, and financial burdens that accompany this diagnosis for the men and women in our community who are forced to battle this disease on a daily basis.http://www.als.org
The ALS Association is the only national non-profit organization fighting ALS on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.http://webnne.alsa.org/site/PageServer?pagename=NNE_homepage
The ALS Association National Office, located in Washington DC and the Northern New England Chapter, located in Concord, NH, work together to accomplish our mission, “To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” The Northern New England Chapter focuses primarily on helping local patients and families live with ALS, while the National Office focuses primarily on research and advocacy. The National Office also supports the Chapters by providing up-to-date information and materials.https://alsworldwide.org/
A nonprofit organization that provides free guidance and support to thousands of people living with ALS and their loved ones in the USA and more than 150 countries via email, online resources and phone. We seek to help people live better and longer with ALS.https://www.mda.org/disease/amyotrophic-lateral-sclerosis
MDA takes a big-picture perspective on neuromuscular diseases, including amyotrophic lateral sclerosis (ALS), so we can work across conditions to find effective treatments and cures. With our collective strength, we encourage early diagnosis and action, support families in hometowns across the country, and uncover research breakthroughs to help everyone with ALS live longer, stronger lives.https://dataportal.answerals.org/home
The Answer ALS data portal is designed to help you mine this wealth of data and resources, ultimately advancing the development of effective therapeutics for ALShttp://www.alsfindingacure.org/
The sole purpose of the ALS Finding a Cure® Initiative is funding research to find a curehttps://www.nejm.org/search?q=amyotrophic+lateral+sclerosis&asug=amyo
Publish the best ALS research and information at the intersection of biomedical science and clinical practice and to present this information in understandable, clinically useful formats that inform health care delivery and improve patient outcomes.https://www.alsmndalliance.org/
The International Alliance of ALS/MND Associations was founded to provide an international community for individual ALS/MND Associations globally. Our vision is world free of ALS and we help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, internal, and external stakeholders connect.https://www.wewillcureals.com/
CURE ALS is dedicated to the mission of raising funds to help find a cure.To improve life for people living with ALS by delivering innovative technology and equipment, as well as providing and empowering an improved life experience.
https://www.alshf.org/
The ALS Hope Foundation funds local and international efforts to find the cause and cure of ALS -
Navigating Clinical Trials With ALS: 8 Things You Should Know
https://augiesquest.org/news/clinicaltrials/
Richard
-
After Being Diagnosed With ALS
Just a few thoughts about the post-ALS diagnosis and working with your physician or ALS clinic:
- Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
- Be provided an ALS primer. ALS introduction paperwork or at least an identification of websites to go to (in a specific order), so to understand the disease, what to expect, medication, research being done, self-help, etc.
- Obtain a second opinion or third, fourth, etc. if necessary.
- Rule out any ALS mimicking diseases, such as Multifocal Motor Neuropathy.
- Be given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t determine the decline progression. Update it daily.
- Familiarize yourself with ALS initial and advanced symptoms.
- Discuss the possibility of being prescribed Riluzole.
- Discuss the possible need for Social Security Administration (SSA) Social Security Disability Insurance (SSDI)
- If you’ve received a diagnosis of Amyotrophic Lateral Sclerosis, you qualify for the Social Security Administration’s Compassionate Allowances program.
- Request guidance through the SSA SSDI and Medicare process
- Discuss the possible need for supplemental insurance for prescriptions, vision and dental
- Discuss the possible need for handicap parking and apply if applicable before it’s needed.
- Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
- Investigate technological options for communicating before the power of speech is altogether gone.
- Consider your future housing needs.
- Email your congressmen for ALS funding and treatment legislation.
- Discuss with your physician any clinical trials being conducted. Working with your physician be presented with what is available and what would work best for you.
- Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression.
- Recommend to be questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. This should be part of physicians and clinics standard practice. Reason, from what I have read online sporadic ALS has unknown origins. Also, ALS progresses differently in different people. It would make sense that physicians and clinics obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
- Sign up for PatientsLikeMe, a health information sharing website that helps people find new treatments, connect with others and take action to improve their outcomes.
- Be aware of the “Right to Try” Act, which allows terminally ill patients access to experimental therapies that have completed Phase I testing but have not been approved by the Food and Drug Administration.
- Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
- Since there is currently no cure for ALS all therapeutic options should be explored with your physician or ALS clinic:
- Get informed about Complementary and Alternative Medicine (CAM) or Alternative or Off-label Treatments (AOT). Even if you only benefit by the placebo effort, you’ll feel better and that’s what we’re all trying to achieve.
- Discuss trying ALSUntangled recommended therapies. Therapies showing some benefit and are not “we do not recommend” should be discussed with your physician as possible options.
The views and opinions expressed herein are my own. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read.
Websites of Interest
ALS Facts
ALS Fact Sheet
https://iamals.org/get-help/frequently-asked-questions-about-als/
Frequently asked questions about ALS
https://iamals.org/get-help/how-to-build-your-care-plan/
A series of checklists with questions to ask your care teams to help get you started.
Symptom Checkers
https://symptomchecker.isabelhealthcare.com/
Isabel – The Symptom Checker doctors use and trust. Developed, refined and tested over 20 years using Artificial Intelligence technologies.
A disease calculator that uses hundreds of thousands of patient records to estimate probability of disease. You may have heard of Watson by IBM, which illustrates a trend of computing and predictive analytics in healthcare. We strive to empower people and medical professionals by placing the state-of-the-art in computer diagnosis at their fingertips.
https://www.everydayhealth.com/symptom-checker/
Everyday Health symptom checker
Functional Rating Scales
https://www.outcomes-umassmed.org/ALS/alsscale.aspx
ALS Functional Rating Scale
ALS Revised Functional Rating Scale
https://med.emory.edu/departments/neurology/programs_centers/emory_als_center/_documents/roads.pdf
Rasch Overall ALS Disability Scale (ROADS)
Latest ALS News
ALS News Today is strictly a news and information website about the disease.
Latest ALS research news
https://www.sciencedaily.com/news/health_medicine/amyotrophic_lateral_sclerosis/
Your source for the latest ALS research news
https://www.news-medical.net/?tag=/Amyotrophic-Lateral-Sclerosis-(ALS)
Puts ALS medical and life sciences information in reach of people that can make a difference.
https://www.answerals.org/news/
A global project dedicated to developing and implementing a unified strategy to stop Amyotrophic Lateral Sclerosis (ALS) through an aggressively funded agenda.
https://alscenter.wustl.edu/news/
Washington University School of Medicine ALS clinic news
https://lesturnerals.org/als-news-and-resources/
Advance scientific research into the causes, treatments and prevention of ALS. Provide exceptional clinical care and support services to people living with ALS, their families and caregivers. Increase awareness and education of ALS.
The aim of ALStreatment.com is to offer a comprehensive resource of information about Amyotrophic Lateral Sclerosis, including its causes, associated symptoms and current available treatments which can help slow down the progression of the disease.
Forums, Information, Support and Resource Sharing
A health information sharing website for patients. Giving patients the opportunity to share both personal stories and health data about your conditions to help uncover great ideas and new knowledge. By sharing information, you can put your disease experiences in context and find answers to the questions you have.
Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers and offering vital resources for people impacted by ALS.
Website helps answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.
https://www.youralsguide.com/resource-list.html
ALS support and resource list
https://www.cdc.gov/als/Default.html
National ALS Registry offers the chance to participate in research and be counted.
https://www.everythingals.org/
EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts — from care to cure — for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies.
http://webct.alsa.org/site/PageServer?pagename=CT_8_patient_family_services
Milford CT – The ALS Association Connecticut Chapter offers a full range of services to guide and assist you as you learn more about ALS.
ALS ONE is an unprecedented partnership of world leaders in ALS research and care who have joined forces to help cut bureaucratic red tape to combat the disease more efficiently and effectively for all.
Clinical Trials, Alternative Treatments and Self Help
Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.
https://www.massgeneral.org/neurology/als/
https://www.massgeneral.org/neurology/als/news/all
The Healey Center for ALS is on a quest to discover life-saving therapies for people worldwide who are affected by amyotrophic lateral sclerosis (ALS).
Reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them.
<h2>https://iamals.org/get-help/#discover-current-and-potential-therapies-als-clinical-trials</h2>
Clinical trial dashboardhttps://iamals.org/get-help/als-signal-clinical-research-dashboard/
Clinical Trial Dashboard
Dashboard Introductory Video
https://iamals.org/get-help/als-treatments-and-trials/#clinical-trials
Find A Clinical Trial
Clinical Trial 101
https://iamals.org/get-help/#discover-current-and-potential-therapies-als-clinical-trials
Clinical Trial Resource Page
ALS Clinical Trials | ALS Therapy Development Institute
https://www.als.net/als-research/als-clinical-trials/
ALS.net clinical trial page
https://www.fda.gov/news-events/public-health-focus/expanded-access
Expanded Access – potential pathway for a patient with an <u>immediately life-threatening condition or serious disease or condition</u> to gain access to an <u>investigational medical product</u> (drug, biologic, or medical device) for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available.
Foundations, Organizations and Research
The ALS Foundation goal is improve the quality of life for those living with ALS and to do whatever they can to ease the physical, emotional, and financial burdens that accompany this diagnosis for the men and women in our community who are forced to battle this disease on a daily basis.
The ALS Association is the only national non-profit organization fighting ALS on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
http://webnne.alsa.org/site/PageServer?pagename=NNE_homepage
The ALS Association National Office, located in Washington DC and the Northern New England Chapter, located in Concord, NH, work together to accomplish our mission, “To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” The Northern New England Chapter focuses primarily on helping local patients and families live with ALS, while the National Office focuses primarily on research and advocacy. The National Office also supports the Chapters by providing up-to-date information and materials.
A nonprofit organization that provides free guidance and support to thousands of people living with ALS and their loved ones in the USA and more than 150 countries via email, online resources and phone. We seek to help people live better and longer with ALS.
https://www.mda.org/disease/amyotrophic-lateral-sclerosis
MDA takes a big-picture perspective on neuromuscular diseases, including amyotrophic lateral sclerosis (ALS), so we can work across conditions to find effective treatments and cures. With our collective strength, we encourage early diagnosis and action, support families in hometowns across the country, and uncover research breakthroughs to help everyone with ALS live longer, stronger lives.
https://dataportal.answerals.org/home
The Answer ALS data portal is designed to help you mine this wealth of data and resources, ultimately advancing the development of effective therapeutics for ALS
http://www.alsfindingacure.org/
The sole purpose of the ALS Finding a Cure® Initiative is funding research to find a cure
https://www.nejm.org/search?q=amyotrophic+lateral+sclerosis&asug=amyo
Publish the best ALS research and information at the intersection of biomedical science and clinical practice and to present this information in understandable, clinically useful formats that inform health care delivery and improve patient outcomes.
https://www.alsmndalliance.org/
The International Alliance of ALS/MND Associations was founded to provide an international community for individual ALS/MND Associations globally. Our vision is world free of ALS and we help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, internal, and external stakeholders connect.
https://www.wewillcureals.com/
CURE ALS is dedicated to the mission of raising funds to help find a cure.
Develops and provides equipment and technology to help restore ALS people’s communication, productivity, and purpose. Provided over $10 million in adventure, technology, equipment, and care services to over 15,000 people living with ALS and countless others through advocacy, support and ultimately bringing an end to the disease.
The ALS Hope Foundation funds local and international efforts to find the cause and cure of ALS
https://iamals.org/latest-research/
Latest research from I AM ALS
ALS Database Registry
The ALS Registry allows persons with ALS to fight back and help defeat ALS. By signing up, being counted, and answering brief questions about you and your disease, you can help researchers find answers to important questions.
The National ALS Registry is a program to collect and analyze data about persons living with ALS.
- It includes data from existing national databases and information provided by persons with ALS who choose to take part.
- Researchers can use Registry data to look for disease pattern changes over time. They can also try to identify whether there are common risk factors among individuals with ALS.
By joining the Registry and taking the risk factor surveys, individuals living with ALS will help provide a better picture of who gets ALS and risk factors for the disease.
https://www.cdc.gov/als/ALSJoinALSRegistry.html
https://www.cdc.gov/als/Default.html
Google Search
To see recent articles, use the “after:” option along with the year, month and day within your google search text. Example below:
after:2021-10-20 ALS treatment news
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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 parts:
First Example:
Frustration comes directly from the ALS Association. I had received an email from them touting their success in their effort to work with the US House of Representatives in passing the ALS Disability Insurance Access Act. Below is a quote from their email:
“Over the last four years, YOU have helped build the momentum and support for this bill. From a single sponsor when it was originally introduced in 2016…”
I wouldn’t be very proud of the fact that it took 4 years to pass. Rather, I’d be embarrassed! Their bar is set way too low if they think 4 years to pass a bill is acceptable and worth bragging about it. These people are one of the voices for the people with ALS (pALS) and it’s clear to me they have no sense of urgency. All this makes me feel that pALS are like a nail competing against a hammer.
Second Example:
Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 31 2021.
Very disappointing results!
No major news outlets were listed in the first 5 search result pages. Just a lot of local outlets. Absent are CNN, NBC, ABC, CBS, OANN, Fox, Newsmax and all the major newspaper’s websites.
Those responsible for getting the word out are clearly failing. A new approach is necessary.
I’ve received lots of emails from ALS and neurological organizations about May being ALS Awareness month. The wrong people are being targeted. People with ALS already know about ALS. It’s the non-ALS community that needs the message being sent to them and that is where the major news outlets can help.
Yes, my friend and I are involved in ALS advocacy.
In the first example, I emailed the ALS Association pointing out to them their lack of urgency.
In the second example, my friend and I had been emailing news organizations, philanthropists, foundations, political people and ALS organizations about ALS awareness. Below is an example of what an email can contain:
========== email Start
Hi.
The month of May is ALS (Amyotrophic Lateral Sclerosis) Awareness Month.
Even though the month of May is over, any time is a good time to make others aware of ALS.
Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is no effective treatment for this deadly disease, no known cause, and currently no cure.
It would be tremendous if your website/newspaper made mention of ALS to your readers to stimulate more awareness, with any of the following information:
1. There are no known causes, no effective treatments or cure.
2. Motor Neuron Diseases such as ALS are increasing in the USA.
3. Only four states have declared May an ALS awareness month.
4. Raise awareness about the difficulties faced by ALS patients and their families.
5. Ask your Senators to support new and increased funding for ALS research.
6. Advance policies that improve the quality of life for ALS patients.
7. Expand the network of support for those suffering from ALS.
8. Advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure.
9. ALS research is underfunded.One of the biggest problems with the ALS awareness is that the non-ALS community does not get sufficiently informed. Emails do get sent out by different ALS and neurological organizations mentioning the challenges and lack of treatment options for ALS. However, the people receiving the emails already know about the suffering that comes with ALS. Due to the rarity of ALS and its deficient awareness, ALS patients and their caregivers sometimes refer to “ALS” as “An over-Look Sickness” or “A Lack of Support”.
It’s more important, it’s imperative to get the word out about the devastation of ALS to people unaware of ALS.
My hope is you will reach out to your audience and inform them of this terrible disease! You can truly save lives and ease the suffering of people by running a news story about ALS.
You can contact the following ALS organizations for more information about ALS:
The ALS Therapy Development Institute (ALS TDI) –
The ALS Association –
I Am ALS –
Steve Gleason Foundation –
The Les Turner ALS Foundation –
North East ALS Consortium –
MDA –Thank you so much for your consideration and all my gratitude!
========== email End
Being an advocate for ALS can be frustrating when you feel that the leading ALS organizations show a lack of urgency.
What is the ALSNewsToday doing to promote advocacy?
For starters, ALSNewsToday can have a link on their home page (and not buried in a forum) on how to and ways to be an ALS advocate, providing links, email addresses and templates.
Richard
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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 responsibility to make a worldwide ALS day for a famous soccer player, either by contacting soccer organizations and/or various ALS organizations.
Soccer, with approximately 6 times as many fans as baseball, you’d think that a soccer worldwide ALS day (or maybe even a week) would have already been accomplished.
Richard
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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
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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 was exactly said.
Hoping and praying that all the research will lead to treatments and cures for all pALS.
Richard
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Perhaps all the ALS associates should find a soccer star who has/had ALS. Since soccer has 3.5 billion fans and baseball only has 500 million fans. Rather than referring to it as Lou Gehrig’s disease, refer it to a soccer player, then maybe that would bring ALS more attention.
Rich
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Thanks for your input…very informative!
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NJGuy, I agree with you when you say: “trials take their own pace.”
Here is an example: On December 24 2021, there was this news story that said the following:
“Japan’s Yamagata University said Friday it has found that a drug being developed for the treatment of Alzheimer’s is also effective in treating amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease.”
That sounds very promising. However, further down in the article it says:
“The research team aims to start clinical trials involving human patients in 2024.”
Really…2024?! Research moves at a snail’s pace.
Here is another example of insufficient media attention:
I went to visit a hospital patient yesterday (12/29/2021). Prior to entry, a hospital COVID receptionist needed to verify my vaccination status along with a photo ID. I struggled to remove my vaccination card and ID from my wallet. Sensing the receptionist frustration with my lengthy and cumbersome effort, I felt that I needed to explained why I was struggling to provide her the required hospital entry information. I said to the receptionist “Have you ever heard of Lou Gehrig Disease or ALS?” She said “No.” I just couldn’t believe her response! How could that be? Especially for a person working in a hospital.
Another example of insufficient media attention:
May is ALS Awareness month. The biggest problem with the ALS Awareness initiative is that the non-ALS community does not get informed adequately. Loads of emails get sent out by different ALS and neurological organizations mentioning that May is ALS Awareness Month. However, the people receiving the emails already know about ALS. It’s more important to get the word out to people unaware of ALS. That’s like telling the person who just jumped out of an airplane that a parachute was necessary, instead of telling the people still on the plane who are getting ready to jump out. The general population, not just people affected by ALS need to be reached in understanding and supporting ALS research.
It’s better to light a candle than curse the darkness. So, my friend Jim and I had been emailing news organizations, philanthropists, foundations, political people and ALS organizations about ALS awareness. If others did the same as we did/do, then maybe the media will take notice. Below is an example of what an email to these organizations could contain:
Hi.
The month of May is ALS (Amyotrophic Lateral Sclerosis) Awareness Month.
Even though the month of May is over, any time is a good time to make others aware of ALS.
Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is no effective treatment for this deadly disease, no known cause, and currently no cure.
It would be tremendous if your website/newspaper made mention of ALS to your readers to stimulate more awareness, with any of the following information:
1. There are no known causes, no effective treatments or cure.
2. Motor Neuron Diseases such as ALS are increasing in the USA.
3. Only four states have declared May an ALS awareness month.
4. Raise awareness about the difficulties faced by ALS patients and their families.
5. Ask your Senators to support new and increased funding for ALS research.
6. Advance policies that improve the quality of life for ALS patients.
7. Expand the network of support for those suffering from ALS.
8. Advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure.
9. ALS research is underfunded.One of the biggest problems with the ALS awareness is that the non-ALS community does not get sufficiently informed. Emails do get sent out by different ALS and neurological organizations mentioning the challenges and lack of treatment options for ALS. However, the people receiving the emails already know about the suffering that comes with ALS. Due to the rarity of ALS and its deficient awareness, ALS patients and their caregivers sometimes refer to “ALS” as “An over-Look Sickness” or “A Lack of Support”.
It’s more important, it’s imperative to get the word out about the devastation of ALS to people unaware of ALS.
My hope is you will reach out to your audience and inform them of this terrible disease! You can truly save lives and ease the suffering of people by running a news story about ALS.
You can contact the following ALS organizations for more information about ALS:
The ALS Therapy Development Institute (ALS TDI) –
The ALS Association –
I Am ALS –
Steve Gleason Foundation –
The Les Turner ALS Foundation –
North East ALS Consortium –
MDA –
EverythingALSThank you so much for your consideration and all my gratitude!
Richard
-
NJGuy, I agree with you when you say: “trials take their own pace.”
Here is an example: On December 24 2021, there was this news story that said the following:
“Japan’s Yamagata University said Friday it has found that a drug being developed for the treatment of Alzheimer’s is also effective in treating amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease.”
That sounds very promising. However, further down in the article it says:
“The research team aims to start clinical trials involving human patients in 2024.”
Really…2024?! Research moves at a snails pace.Here is another example of insufficient media attention:
I went to visit a hospital patient yesterday (12/29/2021). Prior to entry, a hospital COVID receptionist needed to verify my vaccination status along with a photo ID. I struggled to remove my vaccination card and ID from my wallet. Sensing the receptionist frustration with my lengthy and cumbersome effort, I felt that I needed to explained why I was struggling to provide her the required hospital entry information. I said to the receptionist “Have you ever heard of Lou Gehrig Disease or ALS?” She said “No.” I just couldn’t believe her response! How could that be? Especially for a person working in a hospital.
Another example of insufficient media attention:
May is ALS Awareness month. The biggest problem with the ALS Awareness initiative is that the non-ALS community does not get informed adequately. Loads of emails get sent out by different ALS and neurological organizations mentioning that May is ALS Awareness Month. However, the people receiving the emails already know about ALS. It’s more important to get the word out to people unaware of ALS. That’s like telling the person who just jumped out of an airplane that a parachute was necessary, instead of telling the people still on the plane who are getting ready to jump out. The general population, not just people affected by ALS need to be reached in understanding and supporting ALS research.
It’s better to light a candle than curse the darkness. So, my friend Jim and I had been emailing news organizations, philanthropists, foundations, political people and ALS organizations about ALS awareness. If others did the same as we did/do, then maybe the media will take notice. Below is an example of what an email to these organizations could contain:
Hi.
The month of May is ALS (Amyotrophic Lateral Sclerosis) Awareness Month.
Even though the month of May is over, any time is a good time to make others aware of ALS.
Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is no effective treatment for this deadly disease, no known cause, and currently no cure.
It would be tremendous if your website/newspaper made mention of ALS to your readers to stimulate more awareness, with any of the following information:
1. There are no known causes, no effective treatments or cure.
2. Motor Neuron Diseases such as ALS are increasing in the USA.
3. Only four states have declared May an ALS awareness month.
4. Raise awareness about the difficulties faced by ALS patients and their families.
5. Ask your Senators to support new and increased funding for ALS research.
6. Advance policies that improve the quality of life for ALS patients.
7. Expand the network of support for those suffering from ALS.
8. Advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure.
9. ALS research is underfunded.One of the biggest problems with the ALS awareness is that the non-ALS community does not get sufficiently informed. Emails do get sent out by different ALS and neurological organizations mentioning the challenges and lack of treatment options for ALS. However, the people receiving the emails already know about the suffering that comes with ALS. Due to the rarity of ALS and its deficient awareness, ALS patients and their caregivers sometimes refer to “ALS” as “An over-Look Sickness” or “A Lack of Support”.
It’s more important, it’s imperative to get the word out about the devastation of ALS to people unaware of ALS.
My hope is you will reach out to your audience and inform them of this terrible disease! You can truly save lives and ease the suffering of people by running a news story about ALS.
You can contact the following ALS organizations for more information about ALS:
The ALS Therapy Development Institute (ALS TDI) –
The ALS Association –
I Am ALS –
Steve Gleason Foundation –
The Les Turner ALS Foundation –
North East ALS Consortium –
MDA –
EverythingALSThank you so much for your consideration and all my gratitude!
Richard
-
Hi Azizullah,
This website may have the information you need about participation:
https://www.als.net/pmp-enroll/
Richard
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Hi Carol,
My pleasure ?
One more thing…When trying to find the latest ALS treatment news, Google searching on ALS treatments can return an uncountable number of results. A lot of the returned results can be years or even decades old, basically useless information. In order to see the latest and greatest ALS treatment news you can try one of two Google searching options:
In the Google search window enter (every day just change the date to yesterday’s date)
after:2021-11-12 ALS treatment news
or
In the Google search window enter:
“ALS ” treatments
Click on “Tools”
Under “Any Time” select “Past 24 Hours”
I then review the Google returned results under All, News and Video.
The above isn’t perfect but it will help weed out old ALS treatment information that unfortunately never came to fruition.
Rich
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Thanks Jean-Pierre, you answered my question.
Richard
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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
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Perfect John!!
Nothing changes if nothing changes.
Richard