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.
Continue reading Challenge Me to Revolutionize the Treatment of 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.
Continue reading Challenge Me to Help Find a Cure for 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.
TODAY hosts Savannah Guthrie and Jenna Bush Hager took part in The ALS Association’s Challenge Me campaign by taking the pie #InYourFaceALS challenge.
“It’s actually been five years since the Ice Bucket Challenge swept the country. Can you believe it?” Bush Hager said.
“There’s a brand-new social campaign to raise money and awareness for ALS called Challenge Me,” she added.
Continue reading TODAY Show Participates in Challenge Me with Pie-In-Your-Face Challenge
By Pat Quinn and Pete Frates
Co-Founders, ALS Ice Bucket Challenge
Five years ago, we challenged our friends and family to dump buckets full of ice over their heads to raise awareness and funds for ALS. The rest is history. This year, we have a new message: Challenge Me.
What started as a crazy idea turned into the biggest movement in the history of medicine. Over the next few weeks athletes, celebrities, politicians, families and friends around the world took the Challenge and changed the fight against ALS forever. In the summer of 2014, over 17 million people took the Ice Bucket Challenge and raised over $220 million for ALS organizations.
Continue reading Challenge Me to Change the Fight Against ALS Forever
The ALS Association is proud to be a longtime supporter of the Airlie House ALS Clinical Trials Consensus Guidelines, which have been revised and published in Neurology, the most widely read and highly cited peer-reviewed neurology journal.
The goal of the Guidelines is to improve research to test cures for ALS. We believe they will pave the way to decrease clinical trial burden for people with ALS and help contribute innovative designs to clinical trials.
Continue reading Revised ALS Clinical Trials Consensus Guidelines Modernize Trial Practices
Our Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows.
The awards were founded in memory of Mr. Safenowitz by the Safenowitz family – through The ALS Association Greater New York Chapter. The program encourages young scientists to enter and, importantly, to remain in the ALS field.
We are proud that 76 percent of the postdoctoral fellows we fund go on to start their own labs to continue studying ALS and mentor other young ALS researchers. The rest of our Safenowitz fellowship program graduates go on to careers in the biomedical industry, nonprofits, and medical writing, with many still staying in the ALS space.
This year, we are supporting five new postdoctoral fellows out of a highly competitive applicant pool. Over the next few weeks, we will highlight each fellow – their dedication and unique contributions to ALS research, as well as their interests outside of the lab.
We recently talked with Dr. Andrei Ursu from The Scripps Research Institute (Florida Campus) to learn about his unique research project focused on targeting the most common form of genetically inherited ALS, known as c9ALS, with rationally designed lead medicines.
Continue reading Meet Andrei Ursu: A 2018 Milton Safenowitz Postdoctoral Fellow