Challenge Me to Find More ALS Genes

By John Landers, Ph.D.
University of Massachusetts Medical School

Furthering our understanding of disease and the creation of effective therapies won’t happen in a vacuum. My peers and colleagues in the medical research community know first-hand the necessity of global collaborations that bring diverse specialties into the process of understanding complex medical mysteries such as ALS.

A few months before the ALS Ice Bucket Challenge, my colleagues and I approached The ALS Association about investing in the work of Project MinE, a global research consortium focused on understanding the genetics of ALS. Although the Association had a deep interest in advancing work to understand the genetic factors associated with ALS, resources to participate in a significant way were constrained. Genetics research is expensive, and there simply was not sufficient budget to establish a Project MinE branch in the United States.

But gallons upon gallons of ice water later, everything changed.

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Challenge Me to Make the Impossible Possible

By Dexter Ang
Co-founder & CEO, Pison Technology

Watching my mother struggle to interact with the world as her ALS progressed was extremely difficult for our family, and for me personally. Her struggle inspired me to find solutions that could help people like my mother better interact with computers and their environment, even after they have lost almost all of their ability to move. I had the motivation to advance technology in a way that would bring a new quality of life to people living with ALS under Steve Saling’s motto that until medicine proves otherwise, technology is the cure.

Thanks to everyone who contributed to the Ice Bucket Challenge, funds were made available to my company when we won The ALS Association’s Assistive Technology Challenge in 2016. These funds were used to launch my company, Pison Technology, and take my ideas for assistive technology from concept into development. I am grateful every day for the millions of people who participated in the Ice Bucket Challenge and created a whole new environment for those of us working to empower people living with ALS to live more fulfilling lives.

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GUEST BLOG POST: The Promise of CuATSM for ALS and the Challenges of Moving from Mice to Humans

Note: The ALS Association was recently contacted by Dr. Joe Beckman, Ph.D., who had been following recent conversations online about CuATSM and wished to help provide further context about the compound and potential treatment. 

In 2016, my colleagues and I published some remarkable results of a new drug called CuATSM in a mouse model of ALS. Moving CuATSM from mice to humans is a long and difficult road that involves the cooperation and scrutiny of many people. The checks and balances are critical to balance the risks with the benefits of any new therapy. 

For several years, we have been overwhelmed with the patient requests from young mothers and fathers with kids and family members with parents who are anxious to try CuATSM and learn of any possible treatment. It is hard to convey the horror of this disease, and I understand their frustration. A good friend from my time in the Army 40 years ago has developed the disease. After 25 years of work on the disease, I feel I have failed so far. This disease is humiliating in its complexity. The one lesson I have learned is that there are no simple answers or short cuts. 

Continue reading GUEST BLOG POST: The Promise of CuATSM for ALS and the Challenges of Moving from Mice to Humans

Understanding the Impact of the Ice Bucket Challenge on The ALS Association’s Finances

The ALS Association has always been committed to transparency, including providing complete and accurate financial information on our website. We continue to receive the highest ratings from charity watchdog groups tasked with reviewing our spending, fundraising, and management.

The Ice Bucket Challenge generated $115 million for the national office of The ALS Association in 2014, which spurred a massive increase in the Association’s capacity to invest in promising research, the development of assistive technologies, and increased access to care and services for people with ALS. Since 2014, we have committed more than $131 million toward our mission, including over $89 million committed specifically to worldwide research collaborations.

Since that time, the Association has devoted a page on our website to provide a list of how those funds are being spent. You can always find that information by clicking on the “Ice Bucket Challenge Progress” button on our homepage, or you can view those investments here.

After the Ice Bucket Challenge in 2014, The ALS Association’s Board of Trustees determined that the best use of these proceeds was to immediately put them to work by increasing funding in our core mission areas. As a result, we doubled our operating budget, with most of the increase allocated to research and care service initiatives.

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Challenge Me to Revolutionize the Treatment of ALS

By Don Cleveland, Ph.D.
Ludwig Institute for Cancer Research, University of California, San Diego

There was a lot of skepticism in the research community when we proposed development of designer DNA drugs as a way to treat ALS. This therapy is an approach that uses DNA-based designer drugs to “silence” genes that are known to cause a particular disease. The ALS Association was the first funding organization to invest in designer DNA technology research and development for therapy in neurodegenerative disease.

The ALS Association, from the beginning to the present, has been the boldest supporter of designer DNA drug technology and its support has been transformative for the development of promising new therapies. With ALS Ice Bucket Challenge donations, generated by people like you, the Association has been able to double down on its investment in designer DNA drugs. These include trials underway for the two most common genetic causes of ALS, mutation in the SOD1 or C9orf72 genes. Designer DNA drugs to silence either of those genes are now in clinical trials and we’re encouraged by the data gathered thus far. Ice Bucket support also enabled identification of new gene targets that are affected in essentially all ALS patients and that are ideal targets for designer DNA drugs.

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Challenge Me to Help Find a Cure for ALS

By Calaneet Balas
President & CEO, The ALS Association

Last week, Pete Frates and Pat Quinn unveiled a new campaign – Challenge Me — to celebrate the fifth anniversary of the ALS Ice Bucket Challenge and reengage the millions around the world who took the Challenge. Pat and Pete brought the Challenge Me ethos to life with the Ice Bucket Challenge and they have continued to inspire the entire ALS community over the last five years.

Challenge Me alludes to a worldwide phenomenon created and shared by ALS patients, their families, and their friends. Challenge Me is the way anyone and everyone can support people living with ALS. Just as people living with ALS challenge themselves every day, Challenge Me calls on all of us to have the courage, the strength, and the faith to do anything and everything possible to help find a cure for ALS.

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ALS Care Connection Helps Organize Community of Help for Families Impacted by ALS

The impact of an ALS diagnosis is profound – and not just for the person living with the disease.

Daily activities, like making meals, doing laundry, mowing the lawn, and walking the dog, take a back seat when providing care for a family member with ALS.

Caregivers can feel defeated by the growing list of tasks they are no longer able to manage. Yet, it can be hard to know when and how to ask family members, friends, and neighbors for help.

In the same vein, it can be difficult for those who want to lend a helping hand to know just what is needed and how to make a difference.

Our ALS Care Connection program was created to help. The program has expanded to include a new mobile app that can be downloaded to your smartphone or tablet. So, it’s very easy for people to organize a care community for their own family or for loved ones impacted by ALS.

Through ALS Care Connection (powered by Lotsa Helping Hands), families can set up a private online calendar that can be used to organize volunteers who want to take on some of the tasks that have become less manageable.

Now, when someone asks what they can do to help, the answer is, “Let me give you access to our ALS Care Connection calendar.”

To learn more about accessing ALS Care Connection and creating a private community for your family, click here.

The ALS Care Connection mobile app can be found in both the Apple App Store and the Google Play Store by searching for “Lotsa Helping Hands.” Once your family’s private community has been set up, The ALS Association logo will appear at the top.