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Plans are being made for our 2021 Tee Up to CURE ALS golf tournament!
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This year's tournament will be dedicated to the memory of Mike Hubner. Click on Mike's picture below to read about him.
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In the meantime, check out some interesting research developments from 2020!
Together ... we will CURE ALS!
Together ... we will CURE ALS!
2020 - What a Year!
While Covid-19 brought the world almost to a screeching halt, ALS did not stop. And neither did we. We pivoted our annual in-person Tee Up to CURE ALS golf tournament into a virtual event, with 120 golfers participating. Because of their participation and the generosity of donors, CURE ALS was able to donate $55,000 for ALS research! A HUGE THANK YOU TO ALL OUR SUPPORTERS!!!!
AMX0035 Excitement
Undoubtedly, the most exciting thing to happen in the ALS research world in 2020 was that, during clinical trial, AMX0035 (a combo of two experimental drugs) appeared to slow the decline of people with ALS! It’s not clear yet whether AMX0035 extends life or maintains muscle strength. Ordinarily, at least one larger study would be required before the FDA considers approving the drug, , which could take about three years … time that people living with ALS don’t have. However, the ALS Association (one of the organizations CURE ALS supports) and I AM ALS have joined forces to petition the FDA to make an exception and fast track the drug to ALS patients. We are hoping that 2021 brings about approval of this fast-tracking!
AT-1501 Recruiting for Phase 2 Trial
AT-1501, a drug invented at ALS Therapy Development Institute (one of the organizations CURE ALS supports) has begun recruiting for a Phase 2a clinical trial. The Phase 1 trial was a safety study showing that the drug was well tolerated at all doses tested. The endpoints of the Phase 2a trial are safety, tolerability, and changes in pro-inflammatory biomarkers as well as neurofilament light chain. (From ALS TDI)
Studying ALS Reversals
Dr. Richard Bedlack, Director of the Duke Neurology Clinic, has been investigating and validating extremely rare instances of ALS reversals (a person diagnosed with ALS who has regained significant or complete motor function). Dr. Bedlack notes examples in other diseases, like HIV/AIDS, where the identification and study of spontaneously resistant individuals resulted in the identification of important therapeutic targets and the development of effective treatments. Dr. Bedlack and ALS Therapy Development Institute will be collaborating to utilize the same approach in instances of ALS Reversals. People who have experienced ALS reversals will be enrolled into ALS TDI’s Precision Medicine Program in 2021 to explore their blood transcriptomes and proteomes. (from MND Research blog and 2020 ALS TDI Summit Highlights)
Suppressing Neuroinflammation: Cell-Based Therapy – Dr. Stanley Appel
Dr. Stanley Appel has been studying a new immunotherapy – treating ALS patients with infusions of expanded autologous regulatory T lymphocytes (Tregs) that can help protect the body from the harmful inflammation associated with the progression of ALS. A Phase 2 study is showing exciting promise and is providing valuable information to researchers. The Phase 2 study will be complete in Spring of 2021 … we are hoping for positive results! To listen to Dr. Appel explain his Treg study: VIDEO (from Everything ALS and Houston Methodist)
Interesting new finding …
A study led by researchers at the National Institutes of Health has discovered a surprising connection between ALS and FTD (frontotemporal dementia) and the genetic mutation normally understood to cause Huntingtons disease. The finding potentially creates a new pathway for diagnosing and treating some individuals with FTD or ALS. (from Sciencebeta)
Honoring the memories of the co-founders of the ALS Ice Bucket challenge
Back in 2014, supporters of Anthony Senerchia, Jr. posted the first ice bucket challenge. Eventually, the challenge spread to two other men living with the disease – Pete Frates and Pat Quinn. They posted ice bucket challenge videos to their large social media followings and that’s when the campaign really became viral. As the challenge spread, approximately 17 million people around the world doused themselves with buckets of icy water and raised awarenessabout ALS and more than $220 million in donations for ALS research. These donations dramatically accelerated the fight against ALS, leading to new research discoveries, expanded care for people living with ALS, and significant investment from the government in ALS research. In 2015, the ALS Association honored Pat, Pete, and Anthony as “ALS Heroes.” Anthony passed away in 2017, Pete in 2019, and Pat in 2020. They were, indeed, heroes. (from ALSA)
Together ... we will CURE ALS!
AMX0035 Excitement
Undoubtedly, the most exciting thing to happen in the ALS research world in 2020 was that, during clinical trial, AMX0035 (a combo of two experimental drugs) appeared to slow the decline of people with ALS! It’s not clear yet whether AMX0035 extends life or maintains muscle strength. Ordinarily, at least one larger study would be required before the FDA considers approving the drug, , which could take about three years … time that people living with ALS don’t have. However, the ALS Association (one of the organizations CURE ALS supports) and I AM ALS have joined forces to petition the FDA to make an exception and fast track the drug to ALS patients. We are hoping that 2021 brings about approval of this fast-tracking!
AT-1501 Recruiting for Phase 2 Trial
AT-1501, a drug invented at ALS Therapy Development Institute (one of the organizations CURE ALS supports) has begun recruiting for a Phase 2a clinical trial. The Phase 1 trial was a safety study showing that the drug was well tolerated at all doses tested. The endpoints of the Phase 2a trial are safety, tolerability, and changes in pro-inflammatory biomarkers as well as neurofilament light chain. (From ALS TDI)
Studying ALS Reversals
Dr. Richard Bedlack, Director of the Duke Neurology Clinic, has been investigating and validating extremely rare instances of ALS reversals (a person diagnosed with ALS who has regained significant or complete motor function). Dr. Bedlack notes examples in other diseases, like HIV/AIDS, where the identification and study of spontaneously resistant individuals resulted in the identification of important therapeutic targets and the development of effective treatments. Dr. Bedlack and ALS Therapy Development Institute will be collaborating to utilize the same approach in instances of ALS Reversals. People who have experienced ALS reversals will be enrolled into ALS TDI’s Precision Medicine Program in 2021 to explore their blood transcriptomes and proteomes. (from MND Research blog and 2020 ALS TDI Summit Highlights)
Suppressing Neuroinflammation: Cell-Based Therapy – Dr. Stanley Appel
Dr. Stanley Appel has been studying a new immunotherapy – treating ALS patients with infusions of expanded autologous regulatory T lymphocytes (Tregs) that can help protect the body from the harmful inflammation associated with the progression of ALS. A Phase 2 study is showing exciting promise and is providing valuable information to researchers. The Phase 2 study will be complete in Spring of 2021 … we are hoping for positive results! To listen to Dr. Appel explain his Treg study: VIDEO (from Everything ALS and Houston Methodist)
Interesting new finding …
A study led by researchers at the National Institutes of Health has discovered a surprising connection between ALS and FTD (frontotemporal dementia) and the genetic mutation normally understood to cause Huntingtons disease. The finding potentially creates a new pathway for diagnosing and treating some individuals with FTD or ALS. (from Sciencebeta)
Honoring the memories of the co-founders of the ALS Ice Bucket challenge
Back in 2014, supporters of Anthony Senerchia, Jr. posted the first ice bucket challenge. Eventually, the challenge spread to two other men living with the disease – Pete Frates and Pat Quinn. They posted ice bucket challenge videos to their large social media followings and that’s when the campaign really became viral. As the challenge spread, approximately 17 million people around the world doused themselves with buckets of icy water and raised awarenessabout ALS and more than $220 million in donations for ALS research. These donations dramatically accelerated the fight against ALS, leading to new research discoveries, expanded care for people living with ALS, and significant investment from the government in ALS research. In 2015, the ALS Association honored Pat, Pete, and Anthony as “ALS Heroes.” Anthony passed away in 2017, Pete in 2019, and Pat in 2020. They were, indeed, heroes. (from ALSA)
Together ... we will CURE ALS!
Looking back at 2020, we are thankful for everyone who continued to support our efforts to fund the cure!
We invite you to click on the graphics below for our Virtual Tournament Ceremony and a host of other informative clips about research and support
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Contact us!
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For more tournament information:
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