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The ALS Association

  Monthly e-Newsletter of The ALS Association North Carolina Chapter

June 2017

 

Chapter News & Upcoming Events

 

 

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THANK YOU CHARLOTTE AND TRIANGLE SOAKEES

 
 
TY CLT CEO Soak 2021

On November 4, 2021, Michael Bedell, Southeast General Manager/AVP, Walbridge, Craig Hodges, CFO Group, COO & Governance Process Excellence, Bank of America, Phil Ricciardi, Director of Business Development, Manganaro and Derek Johnson, Regional Manager, Mobility and Seating Specialist, Stalls Medical & Adaptive Vans, Inc. joined us for the 1st Annual Charlotte CEO Soak™ at Bojangles Coliseum.
 

TY TRI CEO Soak 2021

On November 4, 2021, Otto Breitschwerdt, Vice President, Caterpillar, Inc., Michael Carpenter, Founder & Owner Professional Healthcare Incorporated, Jim Kirkland, CEO, Empire Equipment Company, LLC, Gregory Poole IV, Construction Division Rental Manager, Gregory Poole Equipment Company and Jerry Stalls, President/Owner, Stalls Medical & Adaptive Vans, Inc. joined us for the 1st Annual Triangle CEO Soak™ at the Caterpillar Edward J. Rapp Customer and Training Center in Clayton.

 

 

Thank you to everyone that made these events happen and for encouraging business participation in the fight against ALS. [Read More]


17th Annual Catfish Classic is in the Books!


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On Monday, November 1st, 140 golfers showed their support for the ALS fight at the 17th Annual Catfish Classic. The day was sunny and North Ridge Country Club in Raleigh was a perfect host. THANK YOU to the amazing volunteers, sponsors, golfers, and the dedicated Catfish Classic committee! Keep your eyes peeled next fall for the 18th annual Catfish Classic!


SAVE THE DATE!

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If you are interested in learning more about the ALS Top Golf event presented by Empire Communities on Monday, January 24, 2022 please visit us at: https://webncalsa.ejoinme.org/2022ALStopgolf There will be food, exciting tournament play, an online auction and an evening with NFL Alumni. 



 


 

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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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House Subcommittee Unanimously Approves ACT for ALS

Accelerating Access to Critical Therapies (ACT) for ALS (H.R. 3537) was approved by a unanimous vote on Thursday, November 4 in the House Energy and Commerce Subcommittee on Health. Thanks to everyone within the ALS community who has advocated for passage and who has worked on Capitol Hill to help make this important step happen. The strong bipartisan support for this bill means smooth sailing as the bill goes to the full House Energy and Commerce Committee and then the full House for approval.

 

Dear FDA: Please Grant Priority Review to AMX0035 and Approve It

We asked the FDA to treat the approval review process of AMX0035 with urgency. Specifically, we sent a letter to FDA asking the agency to conduct a Priority Review of Amylyx’s New Drug Application (NDA) for AMX0035 and then approve it. The Priority Review is an expedited review process, as opposed to the Standard Review process, which can take upwards of a year after the agency accepts submission of the NDA.

 

Finding Critical Resources for ALS Caregivers

The Association provides free online access to a variety of options, including publications, videos, books, and informative websites that provide a wealth of easy-to-access information on important topics relevant for people living with ALS and their caregivers.

 

HOLIDAY DINNERS

TO BE ADDED

 

Researcher Spotlight: Caroline McHutchison

We talked with Dr. Caroline McHutchison, postdoctoral fellow from the University of Edinburgh, to learn more about her research focused on examining the presence, onset, and evolution of cognitive and behavioral symptoms, relative to motor symptom onset and diagnosis of ALS.

 

Loving and Caregiving for Someone Living with ALS and FTD

My husband's ALS diagnosis didn’t explain the symptoms I was seeing. I searched the internet late at night and concluded that he also had Frontotemporal Dementia (FTD). Symptoms of FTD include a loss of empathy and executive function, an increase in inappropriate actions, a lack of judgement and inhibition.

Patty Letters: Advice from a Caregiver

The Letters family has graciously shared different perspectives of their family’s very personal journey with ALS on our blog throughout the past year. In recognition of National Family Caregivers Month, Patty Letters was kind enough to tell her side of the story living as an ALS caregiver.

 

New E-newsletters for the ALS Community

The ALS community is always moving forward. Stay up to date with the latest research and care news by signing up for our NEW e-newsletters, Research Matters and Care Matters.

ALS researchers around the world are working tirelessly in the search for treatments and a cure. Research Matters will include the latest updates.

The ALS Association works to empower those impacted by ALS to live their lives to the fullest. Stay up to date with the latest news and stories about ALS care by subscribing to Care Matters.

 

T-Shirt Contest Winner Announced

Thank you to everyone who participated in our nationwide t-shirt design contest! The winning design, created by Anne Fahey, will be featured on the 2022 Walk to Defeat ALS t-shirts.

Anne is a graphic designer in Princeton, New Jersey, who was diagnosed in 2020 with bulbar onset ALS. She is grateful for the dedicated support and resources of the entire ALS community, especially The ALS Association Greater New York and Greater Philadelphia Chapters.


 

Podcast Episodes

Supporting Family Caregivers
Recorded on November 18, 2021

Jeremy is joined by guest co-host Ken Paves, a celebrity hair stylist and entrepreneur who is the primary caregiver for his mother to dig into some of the challenges of being a caregiver. Later, Jeremy talks to Nancy LeaMond from AARP about some of the ongoing public policy fights that will provide additional support for family caregivers.

Moving ACT for ALS in Congress
Recorded on November 11, 2021

Jeremy is joined by guest co-host Ashely Smith, The ALS Association’s Director of Advocacy, and talks to Rep. Mike Quigley (D-Ill.) to discuss the unanimous subcommittee vote to advance ACT for ALS in the House. Ashley also provides an update on the fights for expanded access to telehealth and increased veterans benefits for people with ALS and their families.

Family Caregivers Month
Recorded on November 4, 2021

Jeremy is joined by guest co-host Steve Becvar, executive director of The ALS Association’s Greater San Diego Chapter, to kick off National Family Caregivers Month. Jeremy also talks to Ann Larson, who was a caregiver to her husband during his fight against ALS, about the challenges of being a caregiver, and to Jennifer Myhre, care services coordinator at The ALS Association MN/ND/SD Chapter, about some of the ways we can support caregivers.

 

Learning Opportunities

Optimizing ALS Care: The Multidisciplinary Clinic
Monday, December 6, 2021
2:00 p.m. EST

 
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The ALS Association North Carolina Chapter
(919) 755-9001 - 4 N. Blount St., Suite 200, Raleigh, NC 27601

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