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.”

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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.

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Jason Walker: ‘I’m Not Done Accomplishing Big Things’

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 participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the sixth profile in that series.

Jason Walker believes his greatest accomplishments have come since his diagnosis with ALS – specifically, being a husband and a father. He met his wife, Annie, three years into his ALS diagnosis and they started dating a year later. They were married in 2014.

“[Annie] chose to look past my disease and see me for me and vowed to stand by my side as we navigate this journey together,” Jason said. “That tells you a lot about the kind of person Annie is – a remarkable, caring, inquisitive, hard-working, loving, beautiful, and endlessly supportive woman.”

A couple of years later, Jason and Annie’s daughter, Eloise, aka Ellis, was born. She is “a precious baby girl,” Jason said, “[who was] brought into this world among our hectic and often chaotic life.” Calling her “incredibly compassionate, patient, and observant, as well as absolutely adorable,” he said. Ellis is tolerant and, even though she isn’t yet two years old, she seems to understand there are times her needs become secondary.

“[Ellis is] my everything and, as if I didn’t have enough reasons to fight this stupid disease, she’s more reason than any,” Jason added. “I LOVE MY GIRLS!”

Continue reading Jason Walker: ‘I’m Not Done Accomplishing Big Things’

Melissa Cordek: ‘My Kids Keep Me Going’

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 helping to make the lives of people with ALS better, the fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the fifth profile in that series.

Thirty-seven-year-old Melissa is a mother to Anthony (14) and Lauren (9). She’s been living with ALS for two years.

“I can’t say that I parent any different [since being diagnosed with ALS],” Melissa said. “As a parent, you have to pick and choose your battles and I’ve never been one to sweat the small stuff. But I can see how much my diagnosis has made my children grow and mature.”

She said Anthony and Lauren have been very brave and their “unconditional love” gives her the strength to keep fighting every day. Her focus is on trying to live every day to the fullest and show Anthony and Lauren how much she loves them.

Continue reading Melissa Cordek: ‘My Kids Keep Me Going’

Joumana Baroody: Raising Her Voice as an ALS Care Advocate

In recognition of this year’s ALS Awareness Month – with a theme of “Raise Your Voice” – we’re sharing many 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 participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the fourth profile in that series.

“I don’t know how I would have done this without your guidance.”

Joumana Baroody heard words like these many times throughout the nine years she worked as a nurse at the ALS Clinic at the University of Chicago. They were spoken by people diagnosed with ALS and their families and caregivers.

They’re words Joumana often remembers before going to sleep at night, when she wakes in the morning, and which she keeps close to her heart as she continues to support the ALS community in her current role as a director of care services for The ALS Association Greater Chicago Chapter.

“We actually keep quotes from the people we serve,” said Joumana. “They’re kept in a folder and we share them with the entire chapter staff to remind us all of what we do every day and why.”

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Guest Post: I’m a Fighter, But I Don’t Fight Alone

By Steve Ziegler

Note: In recognition of National ALS Awareness Month, The ALS Association is sharing many 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, powerful fundraisers, and the researchers fighting for a cure.

I’m proud to be the third person profiled in this series, and I’m happy to be able to tell you my story and why I continue to fight.

Continue reading Guest Post: I’m a Fighter, But I Don’t Fight Alone

David McClain: ‘There is ALWAYS Hope’

In recognition of ALS Awareness Month, we’re sharing many 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 participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the second profile in that series.

Also, The ALS Association just launched three new public service announcements (PSAs) highlighting what life is like with ALS, and we’ll be promoting them throughout this month to show “The Reality of ALS.” Each PSA focuses on a person living with ALS, including David McClain, who is featured in “A Few Words.” (Watch it here.)

David is originally from Rockwall, Texas, and is now on what he calls “an extended stay in New Haven, Connecticut.” He has lived with ALS for more than 15 years.

Until ALS robbed him of his career, he spent 25 years working in sales for a steel company. He and his wife, Donna, met 33 years ago and were engaged after dating two weeks.

Continue reading David McClain: ‘There is ALWAYS Hope’