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The ALS Association
Добавлен 28 мар 2008
Official RUclips channel of The ALS Association.
Our mission is 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.
Our mission is 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.
Let's See More Assistive Technology Support
To learn more about the tenth anniversary of the Ice Bucket Challenge, please visit www.als.org/ibc.
Просмотров: 54
Видео
Movement Matters: A Personalized Approach to Exercise and Fatigue Management in ALS
Просмотров 569 часов назад
Recorded June 2024
Let's See More Caregiver Support
Просмотров 87День назад
To learn more about the tenth anniversary of the Ice Bucket Challenge, please visit www.als.org/ibc.
Let's See More Advocacy
Просмотров 7814 дней назад
To learn more about the tenth anniversary of the Ice Bucket Challenge, visit: www.als.org/ibc.
Let's See More Genetic Treatments
Просмотров 13621 день назад
For more information please visit, ALS.org.
Voice Preservation: Voice Banking and Message Banking-What You Need to Know
Просмотров 167Месяц назад
Recorded May 2024
10th Anniversary of the Ice Bucket Challenge!
Просмотров 539Месяц назад
The ALS Association is commemorating the tenth anniversary of the Ice Bucket Challenge with a series of videos highlighting the progress made over the past decade in treatments, care, research, and support for those living with ALS and their caregivers. To learn more, visit ALS.org/IBC
Community Conversations: Making Air Travel Accessible
Просмотров 81Месяц назад
Recorded April 2024 Webinar Slides: www.als.org/sites/default/files/2024-05/FAA_DOT Webinar Deck.pdf
Emergency Preparedness: Expect the Unexpected, When Living With ALS
Просмотров 230Месяц назад
Recorded April 2024
ALS Research Advances: Making Sense of Antisense Therapy
Просмотров 2673 месяца назад
Recorded March 2024
Community Conversations: ALS Research Appropriations
Просмотров 1113 месяца назад
Community Conversations: ALS Research Appropriations
Building Resilience When You're Affected by ALS: Mental Toughness and Courage
Просмотров 2594 месяца назад
Building Resilience When You're Affected by ALS: Mental Toughness and Courage
Living fully, living well: Palliative care approaches in ALS
Просмотров 4305 месяцев назад
Living fully, living well: Palliative care approaches in ALS
Skills for Effective Caregiving Webinar
Просмотров 1777 месяцев назад
Skills for Effective Caregiving Webinar
Open Enrollment and Insurance Options for People Living With ALS
Просмотров 1598 месяцев назад
Open Enrollment and Insurance Options for People Living With ALS
Communication Information for People Living ALS
Просмотров 1 тыс.8 месяцев назад
Communication Information for People Living ALS
Hospice Care Information for People Living ALS
Просмотров 4338 месяцев назад
Hospice Care Information for People Living ALS
Feeding Tube Information for People Living ALS
Просмотров 1,1 тыс.8 месяцев назад
Feeding Tube Information for People Living ALS
Addressing Respiratory Challenges in ALS
Просмотров 3879 месяцев назад
Addressing Respiratory Challenges in ALS
ALS Focus Survey: Sharing Experiences with Mobility at Home Webinar
Просмотров 21010 месяцев назад
ALS Focus Survey: Sharing Experiences with Mobility at Home Webinar
Racial Disparities in Time to Diagnosis
Просмотров 51610 месяцев назад
Racial Disparities in Time to Diagnosis
The CEO Soak: Making a Splash Against ALS
Просмотров 66410 месяцев назад
The CEO Soak: Making a Splash Against ALS
Is it true what Michael C. Levin has said recently? Sounds like a cure might be coming in the very near future!
Terrible disease.
Prayers
Diagnosed 7-14-20. I am having difficulty breathing now.
Hi, i’m sorry for you difficulty in breathing :( . How were you diagnosed ? What were your first symptoms ? My girlfriend started to have muscle twitches one month ago, and now she has then all over the body and muscle cramps. And also she feels weakness in one hand and leg. She’s going through a lot of anxiety now because she knows about ALS, she’s gonna see a neurologist next week
@@jorjocadan5808 this is my story. I copied it from my notes. I haven’t sugar coated it. Stay positive because it could be 100 different things other than ALS. Those “twitches “ you talk about are called fasciculations if they are part of ALS. If you click on my avatar, I have a few short videos of what my “twitches” (fasciculations) look like for comparison to hers. There have been some questions about my symptoms and onset. I am typing this in my notes on my iPad and hopefully it will copy/ paste over. Here is part of my story I want to point out that there is NO test to determine ALS. ALS is diagnosed by ruling everything else out so time is crucial. Only 10% of ALS patients are in a clinical trial. First noticeable symptoms …. The slight grade on the shower floor was throwing me off balance so I would wash my hair with one hand on the wall. Fatigue - I used to spend 6 hours in my yard and I started to last only 3. My gait was off and I slapped my feet when I walked … hindsight, known as Left Foot Drop My legs always felt full of blood. Like they we going to explode after a long day in the gym. Hindsight- my body was incorporating muscles not intended for the heavy lifting of walking which resulted in them being over exerted and full of blood. My wife is a Nurse Practitioner and connected all the dots. She got me in to see a neurologist ASAP. They did an EMG which is a test where they stick passive listening devices into your muscles at various points and listen to the sound of your muscles communicating. EMG has been around a long time. Yes, it hurts like hell…especially when they rammed the probe through the soft tissue under my chin in order to listen to my tongue. They also do a nerve conduction test where they shoot low voltage pulses into your muscles to test the communication between your nerves and muscles… yes, it hurts like hell too. After I was diagnosed locally, me, my wife and my sister drove from Alabama to the Mayo Clinic in Rochester, MN for a confirmation diagnosis. Great facility. Once confirmed we shifted into Clinical Trial mode. I got into a trial at Mass General Hospital in Boston. In my opinion, Mass General has the best neurology department in the world. My wife and I flew from Alabama and stayed in Boston for 5 days a month for 2 years. I received over 35 spinal taps with an experimental drug that has recently been FDA approved. UNFORTUNATELY, I developed severe side effects that were killing me faster than my disease so I had to pull out… after 2 years. It sucked but that’s what clinical trials are for. I am currently on a regimen of newer versions of older drugs until I can get into another trial which is a long shot because my lung function is declining due to my ALS. You must have a certain lung function to qualify for many trials. As of today, Friday, June 28, 2024 I am trying to get into a Phase 1 clinical trial. This one will be gene therapy and not pharmaceutical. I did a Slow Vital Capacity at my local pulmonary clinic just to self check and see if I could pass a test. The Clinical trials I have been involved with and have researched usually require a SVC of 65%…. I blew a 75% so I’m good. Now, it’s a waiting game for the company to start enrollment. I hope the trial starts before my SVC declines below 65% because that will exclude me from participating in the trial
I would love treatment for all genes. I have C9orf72
Who else is stoned and just doesn’t stretch and is like fuck man I got ALS
God bless everybody living with this heartbreaking disease-one day they’ll be a cure!!
did not know it was live
what about ketogenic or Mediterranean diets for people with ALS?
But can u beat goku?
Sorry but this is not living. Death with dignity. Animals get treated better. This is about milking life for profit. It is not humane to this man.
Why should I donate? This disgusting human being is getting paid $300k a year from donations Fund directly to research, not these🐷
Please sir help me sir please help me my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please can you help me sir please
Please sir help me my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please can you help me sir 😊
Please sir help me sir please help me my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please can you help me
Please sir help me sir please help me my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please can you help me
Crazy that 2 billion and could develop a drug to fight this, but instead we'll just send 6 billion to ukraine
Such a beautiful family, sending love and Strength
damn 11 yrs and no 1k views..
Looks like you're having a good time , have you actually raised any money from this
Less speaking more doing
False hope. Unfortunately. We need more investment to find a real cure.
Thanks!!
Why do I feel alone!!!!
Biden?
They have a path in traditional Chinese medicine that is good for this, Blessed Be.
Please sir help me my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please can you help me sir please please please please please please please please please please please please please please please please please please please
Please sir help me
How to get this medicine please help me sir please
Please sir help me
Please sir help me my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please can you help me sir please please please
Our God is too faithful to fail, after being diagnosed with ALS disease for many years and our medical doctor couldn't do any to help me out of my worsted conditions!! Thank you very much DR EHIMARE ON RUclips CHANNEL for rescuing me out of my condition with your natural herbal medicine cure treatment 🌿🌿!! Sending ❤.
Our God is too faithful to fail, after being diagnosed with ALS disease for many years and our medical doctor couldn't do any to help me out of my worsted conditions!! Thank you very much DR EHIMARE ON RUclips CHANNEL for rescuing me out of my condition with your natural herbal medicine cure treatment 🌿🌿!! Sending ❤
Our God is too faithful to fail, after being diagnosed with ALS disease for many years and our medical doctor couldn't do any to help me out of my worsted conditions!! Thank you very much DR EHIMARE ON RUclips CHANNEL for rescuing me out of my condition with your natural herbal medicine cure treatment ❤.
Our God is too faithful to fail, after being diagnosed with ALS disease for many years and our medical doctor couldn't do any to help me out of my worsted conditions!! Thank you very much DR EHIMARE ON RUclips CHANNEL for rescuing me out of my condition with your natural herbal medicine cure treatment ❤
🙏🤍🕊🙏♥️
I was completely immobile due to my long term ALS condition. I was taking high doses of prednisone and anti-inflammatory medicines, which caused many bad side effects. After I started Dr Ehimare Herbal remedy treatment journey , my condition greatly improved. It's been 13 months since treatment i haven't experienced any more symptoms!!thank you very much( DR EHIMARE ON RUclips CHANNEL)....
I was completely immobile due to my long term ALS condition. I was taking high doses of prednisone and anti-inflammatory medicines, which caused many bad side effects. After I started Dr Ehimare Herbal remedy treatment journey , my condition greatly improved. It's been 13 months since treatment i haven't experienced any more symptoms!!thank you very much( DR EHIMARE ON RUclips CHANNEL)...
I'm so grateful to you Dr EHIMARE ON RUclips CHANNEL who was able to reverse and cured my husband Al's disease with the herbs i ordered from him thank you XX Dr Ehimare ❤.....
I'm so grateful to you Dr EHIMARE ON RUclips CHANNEL who was able to reverse and cured my husband Al's disease with the herbs i ordered from him thank you XX Dr Ehimare ❤....
Please help me sir my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please help me
Please help me sir my name is MOSAROF I'm from Bangladesh I'm 35 year old I'm suffering MND ALS disses one year please help me
Please 🙏 help me 🙏
Please help someone my name is MOSAROF I'm from Bangladesh 35 year old I'm suffering MND ALS disses one year please help me
Please help me sir
Please sir help me
Please 🙏 help me sir please help
Please sir please help me my name is MOSAROF I'm from Bangladesh I'm suffering MND ALS disses one year I'm 35 year old
Hi sir my name is MOSAROF I'm from Bangladesh 35 year old I'm suffering MND ALS disses one year ago please help me sir
Please help me als mnd from Pakistan