The recent ruling by the Supreme Court to overturn Roe v. Wade is a wakeup call for all of us who care about the rights of people being able to make decisions about their own healthcare. No matter your political perspective or leanings, any erosion of the rights for individuals and their loved ones to set the course for their own treatment in consultation with their medical professionals is of great concern.

We talked with Dr. Devesh Pant, postdoctoral fellow from Emory University, to learn more about his research focused on revealing the underlying molecular mechanisms in ALS caused by the SPTLC1 mutations.

While thinking about what I could do that would be a special and fun fundraiser, I noticed a famous drag queen asking for donations to a nonprofit on her social media and I thought “How do I get her to do that for The ALS Association?”

Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present an even greater challenge. Here are some ideas and things to think about to help keep you and your family safe in case of an emergency or a natural disaster.

On June 22, we led delegations of advocates in a full day of virtual congressional meetings to push Congress to support and pass critical legislation that will help the ALS community, including funding for ALS research and making expanded access to telehealth permanent -- 320 ALS Association staff and ALS advocates from 46 states shared their personal stories and experience living with ALS with more than 300 members of Congress and their staff. 

June 21 is a solstice, a turning point, if you will, and each year the ALS/MND community around the world celebrates Global ALS/MND Awareness Day to express their hope that this day will be yet another turning point in the search for causes, treatments and ultimately a cure of ALS/MND.

Since Mark’s diagnosis in 2000, he has been committed to the fight against ALS on many levels. Over the past 21 years, he has advocated locally at the state level and nationally on Capitol Hill. He’s volunteered at innumerous events with The ALS Association Mid-America Chapter and served on the Chapter’s board and Services Committee. All who know him say his ALS diagnosis does not define him, instead it motivates him to do more and to give hope to others.

We talked with Dr. Ahmad Al Khleifat, recent winner of the distinguished ENCALS Young Investigator Award and postdoctoral fellow from King’s College London, to learn more about his research focused on disease gene identification through next generation sequencing, coupled with advanced data analysis to deliver diagnostic tools for complex disease genetics.

It’s going to take all of us working together to make ALS a livable disease and ultimately find a cure. And it will take people like YOU. Whether you have a personal connection to ALS or just want to help make a difference for families impacted by the disease, becoming an advocate is easy.

Our public policy priorities focus on the three main pillars of making ALS livable: Find New Treatments and Cures, Optimize Current Treatments and Care, and Prevent or Delay the Harms of ALS.

I’m hopeful because when my father left us, he left a piece of himself with me, and I’ll do everything I can to raise as much money and awareness as possible so that those three letters - A L S - are no longer considered a death sentence.

Today, in Major League ballparks across the country, fans will take part in the celebration of the second annual Lou Gehrig Day, an event to help spread awareness and raise funds for people living with ALS and their families. And no baseball fan is more excited than Larry Falivena.

Earlier this year Scott Kauffman, a business executive and long-time leader in the fight against ALS, began his tenure as chairman of The ALS Association Board of Trustees. We recently caught up with Scott on Connecting ALS, where he talked about his connection to the disease, raising awareness and his vision for creating a world without ALS.

Dr. Bridget Stegman was diagnosed with bulbar onset ALS in February 2022. She and her family have been embraced by their community, who have showered them with love and hope as they rally together to spread awareness of this disease.

In order to make ALS a livable disease and ultimately find a cure, it’s going to take people living with ALS, their caregivers, family members and loved ones across the country coming together to pursue public policies that help discover new treatments, empower people living with ALS to live life on their own terms and help reduce harms associated with the disease. In the past 12 months, ALS advocates have seen a number of public policy wins.

Long-time natives of Colorado, Ellen and Lorenzo enjoyed an active busy lifestyle. Until ALS entered the picture, their plans for living a long and full life were all they dreamt about.

The work to make ALS a livable disease and continuing to search for a cure rests in no small part on a robust drug discovery pipeline. That is why increasing interest in ALS research is critical. 

Diagnosed with ALS last spring, Heidi Tarr Henson, Ed.D., shares thoughts about her personal journey living with the disease and what real awareness of ALS means to her.

Jackie Heltz is a producer, filmmaker, and writer with a passion for issue-driven documentaries. She is also a dedicated volunteer in the fight against ALS.

In celebration of mothers everywhere today, we are honored to share the story of celebrity hairdresser and beauty expert, Ken Paves, and his amazing story about life, love and caring for his beautiful mother, Helen, who recently lost her battle with ALS.