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Let’s See More Support for Caregivers
Caregivers are the unsung heroes of ALS. Often, they're so busy supporting their loved one, their own physical or mental health takes a back seat. That’s why ensuring caregivers in the ALS community receive the support and assistance they need is critical.
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Team Challenge ALS Takes on the Boston Marathon—And Wins
Eleven individuals who joined together for the 2024 Team Challenge ALS Boston Marathon shows that while each runner completes a marathon on their own, the results of the group can sometimes be so much greater, in so many ways. Overall, the team raised over $190,000 for the fight against ALS.
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Let’s See More ALS Advocacy
The surge in awareness we saw from the Ice Bucket Challenge helped us to make great strides in ALS advocacy. From new policies to help with care and support for families impacted by the disease, to tremendous increases in governmental funding for ALS research, we’ve seen great progress. But we still have work to do and need your help.
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Walking for Wally
Paul Seaver, the manager of community engagement and events for the ALS Association who oversees major events in the Boston area, has a personal connection to ALS—having lost his father to the disease in 2013. He shares his story on how raising awareness and funds for ALS became his priority, even before taking on the role professionally.
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Let’s See More Genetic Testing and Counseling
Since the Ice Bucket Challenge, more than 12 new genes have been discovered, bringing the total number of genes known to have a connection to ALS to more than 40, and the first treatment for a genetic form of the disease was approved. We know that better understanding the genetics of ALS will help make it easier to identify those at risk and ultimately prevent new cases of ALS altogether.
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Baseball Raises ALS Awareness Across the Country with 4th Annual Lou Gehrig Day
Since 2021, June 2 has been celebrated as Lou Gehrig Day by Major League Baseball (MLB) in ballparks across the country -- a day to help spread awareness and raise funds for people living with ALS and their families. Here are some of the events happening across the ALS Association to celebrate this legacy that joins together the baseball and ALS communities.
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Let’s See More Care
We know finding ways to optimize treatments and care, and increasing access to care, helps people with ALS live the way they want with a better quality of life. That’s where multidisciplinary care comes in.
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Selina Lavonne Rambo and “Grandpa’s Wise Words”
Selina Lavonne Rambo wrote the book "Grandpa's Wise Words" for her children to remember the good times they've experienced with their grandpa even though he was facing ALS. She hopes to share with other families with young kids who are affected by the disease.
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Let’s See More Support
Before the Ice Bucket Challenge, the lack of ALS awareness only added to the struggle individuals and their families face. The needs of people living with ALS were not well understood and services were often lacking. After the Challenge, people knew what ALS was, but we still need more support.
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Matt Fleming: Determined to Make a Difference
ALS took away Matt Fleming's ability to run, something that he LOVED to do. But ALS can not stop Matt from moving forward or pushing others to move forward in the fight against the disease.
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ALS Nexus: Preventing ALS and its Harms
One of the leading researchers working to better understand what is going on at the earliest stages of the disease is Michael Benatar, M.D., Ph.D., a professor of neurology at the University of Miami. Through his research, he is identifying biomarkers that could be used to predict who is likely to develop ALS and when, as well as helping develop treatments that could potentially delay or prevent the onset of symptoms. And we are thrilled to announce he will be joining us at ALS Nexus in July to talk about this very important work.
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Jim Plews-Ogan: Living Life to its Fullest Even Amidst Adversity
You can sum up the kind of pediatrician Jim Plews-Ogan was with two words: house calls. During his more than 20 years of practice for adolescents and children in Charlottesville, Virginia, Jim still made house calls when needed as part of the personalized care he offered. Not surprisingly, folks like that end up having deep ties to the community they serve. Even a quick trip to the grocery store for Jim and his wife Peggy often means multiple stops to chat with parents of patients and former patients.
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Let’s See New Treatments
Prior to the Ice Bucket Challenge, there was only one available treatment option for people living with ALS, as well as a few other therapies to help manage symptoms. In the last 10 years, we have seen an influx of researchers and companies striving to discover new treatments and cures for ALS. The result of these efforts has been six FDA approvals for new drugs and new drug formulations. Let's see new treatments until we can find a cure.
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Shelby Kinsey: “I have ALS, ALS does not have me!”
Shelby Kinsey graduated from college in December 2022 and took a job working at a bank while she figured out what she “wanted to be when she grew up.” Ironically, she fell in love with the industry and decided to pursue a master’s degree in finance. Until ALS came along.
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Raising Ice Buckets to Raise ALS Awareness
Nothing has brought more ALS awareness like the Ice Bucket Challenge during the summer of 2014. The viral sensation spanned the globe, forever changing the future and trajectory of ALS. And the awareness and funds generated by the social media phenomena put us on a path to end this disease.
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Bob Scott: Volunteering to Make it a Little Bit More Fair
After being the primary caregiver to his wife of 30 years before she passed away from disease in 2021, Bob Scott wasn’t sure he ever wanted to have anything to do with the letters “ALS” again. But a burning in his gut told him that he should do something to help; that he could try and make it all a bit more “fair.”
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Dylan White: Volunteering to Tell the Story of the ALS Community
In honor of National Volunteer Month, we are recognizing Dylan White for giving his time to photography and video production for us. Dylan's father was diagnosed with ALS in 2017, and he soon realized he wanted to use his skills to give back to the ALS community.
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