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The ALS Association

  Monthly e-Newsletter of The ALS Association North Carolina Chapter

June 2017

 

Chapter News & Upcoming Events

June eNews


Establishing and advancing standards in care for both people living with ALS and their caregivers is at the forefront of our mission. Investing in clinical studies provides the ALS research community with new insights and direction as they work to solve the mysteries of ALS. Click here to find important updates on clinical studies occurring in North Carolina.

People with ALS that participate in clinical trials are heroes. Celebrate these heroes by joining the 2020 North Carolina Virtual Walk to Defeat ALS on September 12th. Follow these steps to get started.

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The FDA has approved the first new drug for ALS in 22 years!

The FDA has approved Radicava™ (Edaravone), the first new treatment specifically for ALS in 22 years. The drug was approved by the FDA less than a year after Mitsubishi Tanabe Pharma Corporation submitted a New Drug Application. The only other approved treatment specifically for ALS, riluzole, was approved in 1995.

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Biographer Reflects on Lou Gehrig's Legacy

July 4th will be the 81st anniversary of Lou Gehrig's farewell speech at Yankee Stadium. On that day, Gehrig called himself the luckiest man on the face of the earth. He wasn’t thinking of himself, though. He was thanking those who had helped him in life. He was helping his family, his friends, and his fans get through the ordeal of his illness. The letters he wrote to his doctor showed that Gehrig did the same thing in private. He showed no self-pity, no denial, only grace.

 

ALS Association Funded Research Finds Path Forward in Search for Biomarkers


Research supported by The ALS Association found that blood plasma analysis could be key to speeding up the process of diagnosing the disease and monitoring disease progression. The research was led by Dr. Michael Bereman from North Carolina State University and supported by a $100,000 grant from The ALS Association, including funding from the North Carolina Chapter.

ALS Association Commends NIH for New Funding Commitment of $25 Million for ALS Research


The National Institutes of Health recently announced plans to spend an additional $25 million to create a new program that will speed up ALS research and support cutting-edge approaches to understanding the disease and developing treatments. The money is scheduled to be spent over five years targeting innovative research through a program called Accelerating Leading-edge Science in ALS or ALS2.

 

Smart Home Technology and ALS

For people living with ALS, reduced physical mobility and the ability to communicate often cause “Smart” homes – in which household items become connected and are controllable with the use of technology – can greatly improve accessibility and be life-changing for people living with the disease.

 

How Access to Telehealth is Changing


While telehealth is expanding access to health care issues, it also creates barriers that are sometimes difficult to overcome, including inconsistent access to high quality, reliable internet service based on geography or cost, discomfort with the use of technology, and privacy.

How to Avoid Misleading Claims About Off-Label Prescription Drug Use


ALSUntangled, an award-winning website dedicated to helping people with ALS figure out whether alternative and off-label treatments are effective and appropriate, has created a list of 10 red flags people with ALS should be aware of when considering off-label treatments they read about on the Internet.

 

Podcast Episodes

Checking on the Global Fight Against ALS
Recorded on June 25, 2020

Your hosts Mike and Jeremy commemorate Global ALS/MND Awareness Day with members of the International Alliance of ALS/MND Associations and get an update on the fight against ALS motor neurone diseases around the world. They are joined by a powerhouse lineup of guest who are leading our fight: Catherine Cummings, executive director of the International Alliance, Gethin Thomas, executive director of research for MND Australia, and Nick Goldup, director of care improvement at the MND Association of England, Wales and Northern Ireland and a board member of the International Alliance. Also joining the discussion and setting the stage is Calaneet Balas, president and CEO of The ALS Association and board chair of the International Alliance.

Remembering Lou Gehrig on His Birthday and Celebrating Father’s Day With ALS
Recorded on June 18, 2020

Mike and Jeremy talk to Larry Falivena, a member of The ALS Association’s national board of trustees. Larry’s shares his memories from his 2019 tour of Major League Baseball stadiums to raise awareness of ALS, his thoughts on Lou Gehrig’s birthday and why the Iron Horse continues to inspire people today, and how Father’s Day has changed since Larry’s 2017 diagnosis with ALS.

Partnering With BrainStorm and I AM ALS in the Search for Biomarkers
Recorded on June 11, 2020

Mike and Jeremy talk to Dr. Ralph Kern, president and chief medical officer at BrainStorm Cell Therapeutics, and Dr. Kuldip Dave, vice president of research at The ALS Association. Drs. Kern and Dave discuss The ALS Association’s partnership with I AM ALS to provide a $500,000 grant to BrainStorm to study biomarkers during BrainStorm’s ongoing phase 3 clinical trial of NurOwn.

 

Learning Opportunities

Telemedicine For ALS Care: A ‘House Call' by the Multidisciplinary Team
Monday, July 20, 2020
2:00 p.m. ET

What does telemedicine look like? Zachary Simmons, MD, Director of the ALS Center at Penn State Health M.S. Hershey Medical Center, will be sharing information related to accessing interactive ALS multidisciplinary care via telemedicine.

 
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