ALS Community Workshop: How to Attend the Live Stream, Ask Questions, and Make Comments

On Thursday, July 12, the ALS community will have the opportunity to meet with representatives from the FDA and the pharmaceutical industry during an ALS Community Workshop in order to discuss the latest FDA guidance document related to ALS drug development.

The Workshop will be streamed live on our ALS Community Workshop webpage, Facebook page, and YouTube channel from 9:00 a.m. EDT to 3:00 p.m. EDT.

Both in-person and online attendees will be able to ask questions and comment. Continue reading for instructions on submitting questions and comments that may be addressed during the Workshop.

If you plan on attending the (online) live stream event, please register here: https://thealsassociation.formstack.com/forms/signup.

Continue reading ALS Community Workshop: How to Attend the Live Stream, Ask Questions, and Make Comments

Join Us at ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry – July 12

The ALS Association is hosting ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry on July 12 in Washington, D.C., and the entire ALS community is invited.

The goal of the workshop will be to provide targeted feedback and information to the Food and Drug Administration (FDA) from people with ALS, caregivers, and stakeholders to inform revisions of the FDA’s Draft Guidance on ALS Drug Development.

Continue reading Join Us at ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry – July 12

Guest Post: ‘ALS is What I Have, Not Who I Am’

By Alan Alderman

Note: In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the thirteenth profile in that series.

Bad things happen to good people every day. That’s just the nature of life. But it doesn’t mean we stop living and loving.

My ALS story officially started on a warm fall afternoon in September 2001. I had been having difficulties with speaking and swallowing for several months. After more than two months of seeing about a dozen different medical professionals, and having more tests than one can imagine, I sat in the small examination room of a local neurologist.

The doctor had just finished an EMG and asked if he could be excused for a minute. What was I to say? No?

He stepped out of the room. I sat alone on the examination table for what seemed like an eternity but was probably only a few minutes.

When he returned, he sat on the small rolling stool and rolled in front of me. He looked me in the eyes, placed his hands on my knees, and said, “Alan, I believe you have ALS.”

Continue reading Guest Post: ‘ALS is What I Have, Not Who I Am’

Donna Boring: “Laughing It Is”

In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 10th profile in that series.

“If I have to be the face of ALS,” Donna Boring said, “it’s not a bad face to have.”

Donna was diagnosed with ALS in 2008, at the age of 37. She is one of the heroes in The ALS Association’s new public service announcement (PSA) campaign showing “The Reality of ALS.”

Continue reading Donna Boring: “Laughing It Is”

Guest Post: This is The Fight of Our Lives

By Aaron Behnke

Note: In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the ninth profile in that series.

My name’s Aaron, but my friends call me “Bankz.” I’m a 39-year-old husband to Abbie and father to seven-month-old Lincoln.

It was a real shock when I received my ALS diagnosis less than six months ago. But now that I’ve had some time to let things sink in, it’s time to make some noise.

So “Team Bankz” is fighting to learn more about ALS and educate everyone who wants to learn. And we, along with other ALS Advocates, are fighting to make sure everyone affected by ALS can live a happy and rewarding life.

We’re fighting to bring hope to each person with ALS facing this battle. And we’re fighting to create opportunities for our friends, our families, and our communities to get involved in the search for a cure.

Continue reading Guest Post: This is The Fight of Our Lives

Passionate ALS Advocacy Fuels the Fight for a Cure

In recognition of ALS Awareness Month – with a theme of “Raise Your Voice” – we’re sharing new stories nearly every day in May. They’re stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the generous fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. They are all part of our ALS community, helping us move toward a world without ALS. This story highlights our National ALS Advocacy Conference – which embodies the true spirit of Raise Your Voice.

We’d like to extend a huge thank you to the more than 570 ALS Advocates who participated in our 2018 National ALS Advocacy Conference in Washington, D.C., this week. Nearly every state in the country was represented and nearly half of the participants were attending for the first time.

Most importantly, more than 100 people living with ALS made the trip to Washington to tell their stories and ask their members of Congress to fund research and do away with the five-month wait for Social Security Disability Insurance.

“Attending the ALS Advocacy Conference was one of the most rewarding things I have ever done,” said Karen Dunn, a first-time participant from Pennsylvania who was attending on behalf of her friend Melissa Cordek, a 37-year-old mother diagnosed with ALS two years ago. “I encourage everyone to become an ALS Advocate.”

Continue reading Passionate ALS Advocacy Fuels the Fight for a Cure

ALS Advocates Make a Real Difference

In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about how you can Raise Your Voice to join the fight against ALS. Today, on the heels of this week’s successful National ALS Advocacy Conference, we’re talking about why we need you to Raise Your Voice as an ALS Advocate.

Why do we advocate? Why do we share our stories? Why do we write letters and ask our friends and family to do the same?

Because advocacy truly makes a difference. In February, our ALS Advocates helped make the Steve Gleason Enduring Voices Act a law.

Continue reading ALS Advocates Make a Real Difference