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ALS Advocacy in Glasgow: One Advocate’s Experience at the 29th International Symposium on ALS/MND

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On December 4th, 2018 ALS Advocate Sunny Erasmus  joined scientists, health care professionals, and other fellow PALS as they made their way to Glasgow, Scotland for the 29th international symposium on ALS/MND. During the 5-day symposium attendees and speakers shared information on the latest research, discussed future collaborations, and had discussions about patient care services. The ALS Association was also in attendance, joining other members of the International Alliance of ALS/MND Associations to exchange information about the care and support of people with ALS/MND everywhere.

Here’s a short summary of some of the panels Sunny attended during her three days in Glasgow: [Read more…]

Remembering Stephen Winthrop, Chair of The ALS Association Board of Trustees

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We’re sad to report that Stephen Winthrop, Chair of the ALS Association Board of Trustees, passed away peacefully on December 24th while surrounded by loved ones. Stephen will be remembered as a champion for those with ALS and a true ALS Hero.

On November 6th, 2013 Stephen Winthrop, Chair of The ALS Association Board of Trustees, was diagnosed with ALS. Without missing a beat, Stephen and his wife went to work spreading awareness of the disease through their Facebook page WillWinAgainstALS, and through fundraising- regularly being recognized as the highest earners for The ALS Association’s Massachusetts Chapter during the Walk to Defeat ALS.

Stephen taking part in the Ice Bucket Challenge

In his five years of living with ALS, Stephen was recognized with a Hero Award from the ALS Association, participated in clinical trials to further research efforts, took part in the Ice Bucket Challenge and served as Chair of the Board of Trustees. Stephen will always be remembered for his tireless work to spread awareness of this devastating disease.

“Over the past few years I had the privilege of working with Stephen on several occasions. Stephen led with wisdom, grace and showed true perseverance. He never let ALS define him. Stephen truly made a huge impact on the path to creating a world without ALS. He will be missed.”

Tanner Hockensmith
Executive Director
ALS Association of Texas

“I have ALS, but it doesn’t have me.” – Collin’s Story

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After being diagnosed with ALS in October of 2014, Collin Hadley gave himself one day to be frustrated, only one, before declaring “I have ALS, but it doesn’t have me.” 

Since that day Collin and his family have set out to make as many memories as possible, including 25 family trips, fundraising for ALS, finishing the Cowtown half marathon (in a neon pink stroller), and more. Although Collin strives to be positive he recognizes that not every day is easy. He says, “Though not visible on a daily basis, every month for the rest of your life is a little more difficult than the one before.”

Even in the face of ALS, Collin has continued to grab life by the horns with the help of the ALS Association of Texas. “When I had my first falls with this disease, they got a hoyer lift in my home immediately.  When it was no longer safe for me to stand up in the shower, they had a shower chair sent to me that day. When I could no longer get in the swimming pool with my kids, they found me a pool lift.” He went on to describe how an ALS Association representative made a 4.5 hour drive to deliver a power wheelchair to his hotel room when he was on vacation. “The ALS Association staff and volunteers have dedicated their lives to ensure that those living with ALS today can continue to live life and make memories”.

Collin stresses the importance of having a community of heroes to help people with ALS navigate through life- “This terrible disease takes a village, and thankfully the one many of you have built for me and my family is rock solid.”

Interested in becoming an ALS hero for people like Collin? Donate today!

ALS Hero: Steve Gleason

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Photo Credit: @teamgleason on Twitter

“ALS Hero” is a series focusing on highlighting notable PALS who have made an impact on their communities and the world at large.

In 2006 Steve Gleason was responsible for one of the most notable moments in New Orleans Saints’ history- his blocked punt in the Louisiana superdome, which had opened for the first time since Hurricane Katrina. Less than five years later, in 2011, Steve was diagnosed with ALS.

Since then, Steve has become an unwavering advocate for fellow PALs. Thanks to his push for technological advances to help those with ALS, Microsoft developed power wheelchairs that could be controlled via eye-tracking software. This is an amazing feature for people who have become weakened or paralyzed by the disease. Besides pushing for better tech Steve is also heavily invested in progressive research, holding the world’s largest coordinated and collaborative ALS research project in 2014. In 2016 his documentary “Gleason”, detailing his life with ALS, premiered at that year’s Sundance Festival to critical acclaim.

Now, our ALS Advocacy team is working with others to help secure Steve Gleason the Congressional Gold Medal. After all Steve has done to spread awareness and help his fellow PALS around the world, we think it’s well deserved! Want to assist us in this effort? Contact your House leader to request they sign on as a co-sponsor. Learn more here: https://www.honorgleason.com/contact

Interested in helping us in our mission to create a world without ALS? Donate today!

Project Revoice: Giving Back Voices Stolen by ALS

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What does it mean to lose your voice? For many, the loss of vocal communication means losing a piece of what makes them feel human. As ALS progresses it robs people of their ability to speak, leaving them to talk to loved ones through devices with clunky, computerized voices.

Pat Quinn, creator of the famous Ice Bucket Challenge, spoke to the ALS Association about the pain of losing your voice- “It is crushing when you have so much to say but you are almost forced to keep it in.”

We understand the pain patients endure as they feel their voices slipping away and we set out to do something about it. In 2018 we launched Project Revoice– an initiative aimed to return voices stolen by ALS. Thanks to technology created by Canadian-based tech company Lyrebird, ALS patients will be given new, natural sounding “voices” by having their own voices banked and fed through speech-generating devices.

It’s through Project Revoice that Pat was once again able to hear his own voice. “It truly feels like a piece of me that ALS took away has returned” he said, in his own voice. He continued, expressing how this new development gave him the push he needed to keep going-  “This has lit a fire inside me to continue fighting with everything I have.”

The ALS Association hopes to spark more innovative efforts like Project Revoice, and each and every day we’re making progress thanks to wonderful people like you! Would you like to help us create a world without ALS? Donate today.


How Sunny Erasmus is Raising Her Voice for ALS

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Since being diagnosed with ALS in 2015, right before her 28th birthday, Sunny Erasmus has become a warrior for others with the devastating disease. “There are many things that ALS has taken away from me”, she says, “but my voice is loud and persistent in the fight to end this disease”.

In May of 2018 she was one of 570 ALS advocates who made their way to Washington DC for the National ALS Advocacy Conference. There, people with ALS, their friends, and their families were able to make their voices heard and speak up for those who no longer can.

Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

At the conference advocates like Sunny learned about the latest ALS research, care service programs, and advocacy efforts to prepare them for meetings with Texas congressional staff and representatives. During those meetings advocates fought for public policy initiatives that would improve the lives of people with ALS, including:

  • Ensure at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
  • Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
  • Support increased funding for the National Institutes of Health (NIH) in FY2019, especially in the National Institute of Neurological Disorders and Stroke (NINDS).
  • Pass the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
  • Educate and influence Congress and Administrative officials to remove complex barriers to Medicare home health benefits for people living with ALS.

Sunny called the conference one of the most impactful experiences of her life, where she learned about what it means to be an advocate, what to advocate for, and the progress that’s being made by other ALS advocates along the way. “Keeping up energy and focus is hard”, she says, “but advocating for my fellow ALS soldiers has sparked a fire in me that will never go out”.

It’s advocates like Sunny that spark energy to create change in public policy and beyond. Interested in becoming an advocate? Sign up today!

 

ALS Association Awards $1 Million to Fund Potential ALS Treatment

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Today marks a monumental day for ALS research as the first in-human clinical trials of AT-1501 have begun. AT-1501 is an antibody therapeutic developed by the ALS Therapy Development Institute (ALS TDI), with support from The ALS Association, ALS ONE, and ALS Finding a Cure®. The drug blocks immune cell activation and protects nerves against the progression of ALS. As of today researchers at Anelixis Therapeutics, lead by Dr. Steve Perrin, have successfully administered a dose of AT-1501 to the study’s first participant.

This is a great progressive step on our journey for a cure, and we’re happy to announce that the ALS Association awarded an additional $1 million to Anelixis to help fund this groundbreaking research.

“We are proud to partner with Anelixis and other ALS organizations to help advance this promising compound into clinical trials,” said Calaneet Balas, President and CEO of The ALS Association.

The safety trial of this potentially new treatment is currently enrolling volunteers, both those with ALS and those without, to participate in the study. In total, eight people with ALS will receive AT-1501 and will be monitored for safety , tolerability, and how the drug moves through the body. If it’s proven safe the trial will then move on to Phase II.

We’re excited for the prospect of this new treatment and we remain hopeful that together with patients, caretakers, donors, and researchers we can create a world without ALS.

Help us create a world without ALS by donating today.

“Spark Hope For a World Without ALS” – Our 2018 Recap

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In 2018 we set out with the goal to spark hope, ignite action, and inspire others to join us in the fight to create a world without ALS. And it was thanks to our wonderful community that we were able to achieve that goal. Throughout the year we provided patient services, hosted community events, and helped fund life-changing research to find new treatments for this devastating disease.

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