Guest Post: ‘I’m Really Fighting for My Family’

By Stacy Crowder

There’s no sugarcoating it. ALS is terrible.

Unlike many fathers this Halloween, I couldn’t carve a pumpkin with my kids. I also couldn’t help them put on their costumes or take them trick-or-treating.

I didn’t know much about ALS before my diagnosis, but I became an expert pretty quick. I also got to work fighting – and not just for me but to bring hope to everyone living with ALS.

Continue reading Guest Post: ‘I’m Really Fighting for My Family’

Guest Post: Putting the Brakes on ALS – The Power of Community

By Kaisha Johnson and Cliff Whitlock, The ALS Association Golden West Chapter

More than 1,200 participants, volunteers, and members of the community came together for a family-friendly day of celebration, exercise, education, awareness, music, food, and family fun at The ALS Association Golden West Chapter’s 14th annual Napa Valley Ride to Defeat ALS and Walk on Saturday, September 22.

Together, these dedicated individuals raised more than $920,000 on event day toward a $1 million goal to fund the mission priorities of the Golden West Chapter in care services, advocacy, and research.

Held at the California Veterans Home in Yountville, the annual Fall event brings incredible energy and an outpouring of support for those affected by ALS in California and around the world. Many participants said it was the best ride they’ve attended.

There was an incredible outpouring of community support, including more than 140 volunteers who set up, checked in participants, served food and drinks, supported rest stops and the six bike routes, cheered on all of our incredible riders and walkers as they crossed the finish line, and so much more.

Continue reading Guest Post: Putting the Brakes on ALS – The Power of Community

Team Challenge ALS Climbs to Defeat ALS

An amazing group of people came together for Climb to Defeat ALS earlier this month. The first Team Challenge ALS team summited Mt. Elbert in Colorado on September 7 and has raised over $65,000 for The ALS Association, so far.

We asked a few team members to tell us about their experiences.

Continue reading Team Challenge ALS Climbs to Defeat ALS

Members of ALS Community Gather with Representatives from FDA and Industry to Inform FDA Draft Guidance on ALS

The ALS community recently presented its recommendations to the U.S. Food and Drug Administration (FDA) regarding the Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry at a day-long event, called ALS Community Workshop: Therapy Development and Regulatory Pathways, which was held in Washington, D.C., on July 12. Over 90 people attended in person, with many more tuning in online.

Throughout the day, there were opportunities to make comments to the FDA and industry representatives, both in-person and online. The Association was proud to host the day to bring many ALS stakeholders together to provide targeted feedback and information to further inform the FDA’s Draft Guidance on ALS Drug Development.

The FDA’s Draft Guidance provides drug developers with recommendations for all aspects of clinical trials for ALS, from study design to risk-benefit considerations to patient selection. For many years, The ALS Association has worked closely with the FDA and members of the ALS community in the development of a comprehensive ALS Guidance to make clinical trials faster, shorter, and more responsive to special considerations inherent to people with ALS and their caregivers.

The Workshop was an opportunity to provide targeted feedback and information from the ALS community to further inform the FDA’s Draft Guidance on ALS Drug Development. After the Workshop, the Association composed a report to the FDA to address key points discussed at the Workshop and to make recommendations on how to improve the FDA’s final Guidance (listed below).

“The purpose today is to build a strong guidance together,” said Calaneet Balas, president and CEO of The ALS Association. “We will be taking the great ideas from this meeting and presenting them to the FDA for their consideration in developing the final Guidance document. We look forward to that document, and to seeing it used widely for making clinical trials faster, more effective, and more aligned with the needs of patients and caregivers. We believe that is the route to the fastest development of new treatments for ALS.”

Continue reading Members of ALS Community Gather with Representatives from FDA and Industry to Inform FDA Draft Guidance on ALS

Unlock ALS Honors the Real Reasons We Walk to Defeat ALS

“When someone you love becomes a memory…that memory becomes a treasure,” said Christine Caron, a participant in the Western Massachusetts Walk to Defeat ALS.

Each year, tens of thousands of people come together at Walk to Defeat ALS® events across the country with one common goal: to remember treasured loved ones and honor those who are fighting ALS every day.

The ALS Association launched Unlock ALS at Walk events this fall to provide participants with a tangible way to recognize the real reasons we Walk to Defeat ALS. At each Walk event, participants select a lanyard in one of four colors to represent their connection to ALS, receive a branded key, and join in a meaningful opening ceremony.

“Seeing all the different colored lanyards made me feel like we were one big family as we’re all going through this together,” said Roxane Baillargeon, a Western Massachusetts Walk participant who is living with ALS.

Continue reading Unlock ALS Honors the Real Reasons We Walk to Defeat ALS

Guest Post: We Don’t Have Five Months to Wait

By Mary Johnson, Caregiver – Western Pennsylvania

Note: Under current law, people disabled with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI benefits. Every person must wait, regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.

The ALS Disability Insurance Access Act (S.379/H.R.1171) would eliminate that five-month waiting period for people with ALS to receive SSDI. People with ALS would receive their SSDI benefits immediately after being approved by the SSA.

The five-month waiting period for Social Security Disability Insurance (SSDI) after an ALS diagnosis has severely impacted my family and I’m mad as hell about it. There’s absolutely no reason people with ALS shouldn’t be getting both SSDI and Medicare benefits immediately.

I can tell you from my own experience – we don’t have five months to wait.

My family has the genetic form of ALS (familial ALS). As of June 2018, I’ve lost 14 family members — siblings, aunts and uncles, nieces and nephews, and cousins – to this horrific disease.

My 25-year-old niece, Amanda, died four months after her ALS diagnosis – before the SSDI waiting period was met. The same situation occurred for my niece, Shannon, who died at age 34. She was diagnosed in January 2013 and died just two months later.

Continue reading Guest Post: We Don’t Have Five Months to Wait

ALS Takes Away a Person’s Livelihood

In New Video, People With ALS Talk About Losing Jobs to the Disease

This weekend, people across the country will pause to reflect on and celebrate the economic and social value of American workers. And on Monday, many of them will enjoy a paid holiday off from work.

As we light the grills to enjoy a long Labor Day weekend and enjoy a break from some of the doldrums of work – the long commutes, the looming deadlines, and the stress and monotony – there are many people who want to work but are unable to do so.

One of the first things ALS often takes away is a person’s ability earn a living. In this new video, people living with ALS, along with their caregivers and friends, talk about the impact ALS has on the ability to work.

Please watch and share this video with your friends and family and encourage them to join the fight for a world without ALS.

Continue reading ALS Takes Away a Person’s Livelihood