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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Meet Nibha Mishra: A Bright, Young ALS Researcher

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 fight toward a world without ALS.

The ALS Association is happy to continue our tradition of supporting bright, young scientists in ALS research through our Milton Safenowitz Postdoctoral Fellowship Program. These awards encourage young scientists to enter and, importantly, to remain in the ALS field.

We are proud that 90 percent of our funded postdoctoral fellows go on to start their own ALS research labs and continue to mentor more young scientists, further adding innovative ideas to the field.

This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. This is the fourth in a series of six articles highlighting the dedication and unique contribution each fellow makes to ALS research, while getting to know the person behind the lab coat.

Today, we sit down with Dr. Nibha Mishra from Massachusetts General Hospital and Harvard Medical School to learn about her unique research project aimed at understanding disease pathways associated with ALS fused in sarcoma (FUS) gene mutations.

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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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Biohaven Initiates Expanded Access Program for ALS Drug BHV-0223

Biohaven Pharmaceuticals, Inc. initiated an expanded access program (EAP) of BHV-0223 drug, a sublingual, lower dose formulation of Rilutek® (riluzole). The drug uses a Zydis® orally dissolving tablet technology, which does not require swallowing or additional fluids. Riluzole is the first drug approved by the U.S. Food and Drug Administration to treat ALS. It prolongs life approximately three months.

“It is great for the ALS community that Biohaven is taking advantage of the FDA’s expanded access program,” said Calaneet Balas, president and CEO of The ALS Association. “We believe this is the first instance of a company offering expanded access for widespread use in ALS. Such programs enable people with ALS and their doctors to consider the use of investigational drugs.”

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