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.

TODAY Show Participates in Challenge Me with Pie-In-Your-Face Challenge

TODAY hosts Savannah Guthrie and Jenna Bush Hager took part in The ALS Association’s Challenge Me campaign by taking the pie #InYourFaceALS challenge.

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“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

Meet Jorge Gomez-Deza: A 2018 Milton Safenowitz Postdoctoral Fellow

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. Jorge Gomez-Deza with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)/National Institutes of Health (NIH) to learn about his unique research project, which has the ultimate goal of identifying a druggable target that prevents neuronal death.

Continue reading Meet Jorge Gomez-Deza: A 2018 Milton Safenowitz Postdoctoral Fellow

Challenge Me to Change the Fight Against ALS Forever

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.

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FAQ: Biogen is Now Enrolling in Phase 3 VALOR Clinical Trial to Test Safety and Efficacy of Tofersen

Biogen has initiated a phase 3 clinical trial evaluating tofersen (previously called BIIB067), an antisense oligonucleotide (ASO), a type of antisense drug, targeting superoxide dismutase (SOD1), for the potential treatment of ALS. The trial is now enrolling and aims to enroll approximately 60 people with SOD1 ALS

At this week’s 2019 American Academy of Neurology (AAN) Annual Meeting in Philadelphia, Biogen presented promising results of their phase 1/2 SOD1-ALS trial (tofersen – BIIB067). They were encouraged by the initial findings of the study, so they are moving into a larger phase 3 trial to further test the safety and efficacy of tofersen. While this news is promising, it is important to note that the drug (tofersen) is still experimental.

Continue reading FAQ: Biogen is Now Enrolling in Phase 3 VALOR Clinical Trial to Test Safety and Efficacy of Tofersen

New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

The ALS Association is pleased to announce a new scholarship program that will fund up to $5,000 per year for at least 30 students whose personal or family finances are compromised by the financial burden of ALS.

The Jane Calmes ALS Scholarship Fund was established by Mark Calmes, vice chair of The ALS Association’s National Board of Trustees. The scholarship fund is named in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017.

“Jane amazed me every day,” Mark says. “She was a fighter who battled three illnesses in a row – a silent heart attack, breast cancer, and then ALS. After she died, I began to think of ways to honor her courageous spirit and compassion. The idea of a scholarship program resonated with me because Jane was always keen on the lifelong benefits provided by education.”

Continue reading New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

Revised ALS Clinical Trials Consensus Guidelines Modernize Trial Practices

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