Groundbreaking ALS Voice of the Patient Report Submitted to FDA

The ALS Association submitted a report to the FDA documenting the real impact ALS has on people living with the disease and their caregivers in order to inform the development of treatments. The information in the report draws from a survey of people living with ALS.   

The ALS Voice of the Patient Report is a groundbreaking document that gives the FDA and other key stakeholders, including drug developers, health care providers, and insurance companies, data from people with ALS and caregivers about the  everyday impact and burden the disease has on peoples’ daily lives, their experiences with currently available treatments, and their hopes for future ALS therapies. This information is also intended to help provide context of the disease burden to the FDA to inform the Agency’s review of new drug applications. This report speaks loudly and clearly to the immense unmet medical need we all are working to confront.

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The Iron Woman Behind the Iron Horse

The Greater New York Chapter of The ALS Association has commemorated a pivotal caregiver from ALS history with a luncheon named in honor of Eleanor Gehrig, the wife of famed baseball hero Lou Gehrig.

November is National Family Caregivers Month, and throughout the month The ALS Association is sharing stories of caregivers from our community. 

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Anthony Vick: “Faith Over Fear”

Anthony Vick spent 16 years serving his country in the Army and Air Force Reserves, including 10 years in the civil service. Vick says he was lucky to be able to serve his country, service that came to an end in 2017 when he was diagnosed with ALS. 

“It was very slow to come about. It took about two years, probably 50 doctor visits, two surgeries and was set up to have a third surgery on my spine, and the week before I went in, my doctor referred me to another neurologist,” Vick says.

It was during that visit to the neurologist that Vick first learned that his symptoms might be related to ALS. 

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Maya Bulmer: “Today is what we have”

Maya Bulmer was thrust into the role of caregiver at a young age. Like many seniors in high school, Maya spent the 2018-2019 school year filling out college applications, readying for the next chapter in her life. 

“I had it all planned out, I had full tuition, I had something that I wanted to do in a career that I was interested in,” Maya said when we sat down to talk earlier this year. Maya’s mother, Elizabeth McCormick, is the director of clinical education programs at the University of Tulsa 

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ALS Community Responds to FDA Guidance Document with Call for More Urgency, Flexibility

The ALS Association and its partners submitted comments to the Food and Drug Administration to further inform the agency’s implementation of the final guidance on the development of drugs and treatments for ALS. The comments underscore the need for urgency and commend the FDA for including voices from our community in its rule making process. Click here to view the comments.

The ALS Association has been working closely with members of the ALS community and the FDA to create a landmark, patient-led guidance initiative that will help drive ALS drug innovation more quickly from the laboratory to the patient, providing feedback to the agency, hosting a national workshop, and creating a report that informed finalization of the guidance. 

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High School Students Spread Awareness and Raise Money for ALS Research

When the Biology Honors class kicked off a special course to learn more about neurological diseases, they turned it into a unified effort to educate their community and raise over $3,000 for ALS research.

The ALS Association spoke to some of the folks behind the project. 

It all began with a partnership between Great Valley High School, the Live Like Lou Center for ALS Research at the University of Pittsburgh Brain Institute, and the Beating the Odds Foundation, a Pennsylvania nonprofit that encourages kids to achieve success in school and in life.  At the beginning of the last school year, starting in September 2018, the students took a special honors course written and led by Kathleen Crisi and Christina Medvec, who are biology teachers at Great Valley High. 

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The ALS Association Updates Terms of Service to Ensure Social Media Serves to Help Advance Our Mission

Social media channels are important and powerful tools to advance our shared mission to “discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.”

However, when people use social media platforms to actively spread misinformation and personal attacks, or threaten violence, they harm all of us – and especially people with ALS and their families. There is too much at stake to allow the bullying and negative attacks of a few individuals to harm progress toward finding treatments and a cure. 

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