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The ALS Association

  Monthly e-Newsletter of The ALS Association North Carolina Chapter

June 2017

 

Chapter News & Upcoming Events

Give a gift of hope and help. Your gift makes a difference in the lives of the approximately 800 North Carolinians living with ALS each year and gets us closer to a cure! Donate here and click below to learn more about what’s happening with the North Carolina Chapter. Thank you for making an impact in the fight against ALS!

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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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Help Protect the Right to Breathe

Despite our advocacy and the assistance of Congress, the Centers for Medicare and Medicaid Services (CMS) recently moved forward with a plan to include noninvasive ventilators in the next round of the competitive bidding program. To prevent this from happening, Representatives Morgan Griffith (R-VA) and Peter Welch (D-VT) introduced the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act, which would remove noninvasive ventilators from competitive bidding and require Medicare to update outdated coverage policies governing the use of noninvasive ventilators.

Send a letter today to urge your members of Congress to cosponsor the SMART Act to safeguard access to critical respiratory care!

 

Show Appreciation to a Caregiver During National Family Caregivers Month

November is National Family Caregivers Month. Join The ALS Association in honoring caregivers throughout the month.

According to a 2018 report from the National Alliance for Caregiving, primary caregivers are often family members or partners who spend up to 11 hours a day with the patient.

 

ALS Association Contributes $3.3 Million to Fund Groundbreaking Genome-Sequencing Database


A global, centralized, cloud-based repository of ALS genetic data is being assembled with funding from The ALS Association. This is the first such repository of its kind.

How ALS Association Advocates Boosted Congressional Funding for ALS Research


Considering a government shutdown has been averted until just before Thanksgiving, it is worth reflecting on the hard work and success The ALS Association and its advocates have had in securing funding for ALS research and to look ahead to what’s next.

 

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.

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.

 

High School Students Spread Awareness and Raise Money for ALS Research

When a Pennsylvania 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.

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.

 

Learning Opportunities


The Neuropathology of ALS: What can we learn?

Wednesday, November 13, 2019
1:00 p.m. EST

Research experiments in ALS and other neurodegenerative diseases are highly dependent on the study of human nervous system tissues. Brain, spinal cord and other tissues are used for diagnosis as well as for discovery of disease mechanisms that can lead to disease modeling and therapy development. In this webinar, Dr. Glass will discuss the basics of neuropathology as it relates to ALS, including demonstrations of pathological features that have led to major investigations focused on understanding the underpinnings of ALS and the search for a cure.

REFINE-ALS: A Much Needed Biomarker Study of Edaravone (Radicava) in ALS
Thursday, November 14, 2019
4:00 p.m. EST

We will review edaravone evidence, talk about the use of biomarkers to understand the effect of medical therapies, present the design of the REFINE-ALS study, and discuss how people can get involved in the study.

What You Need to Know About Quitting Your Job to Provide Care: Developing a Plan to Maximize Independence in Providing and Receiving Care
Monday, November 18, 2019
2:00 p.m. EST

Leaving the workforce can have unexpected emotional, financial, medical, and social repercussions that should be thought through carefully. Guest speaker, Rebekah Keizer MA, BCC, shares what you need to know before making this choice and provides a detailed look at the many resources that can be utilized to help maximize independence for those providing and receiving care.

How to Gain Access to VOCSN and Overview of Reimbursement Process
Wednesday, November 20, 2019
1:00 p.m. EST

Five therapies. One Device. VOCSN integrates five separate medical devices, including a ventilator, oxygen concentrator, cough assist, suction, and nebulizer, into one multi-function ventilator. Learn how to gain access to VOCSN and the reimbursement process.

I Just Took a DNA test – Turns Out I Don't Have All the Answers
Friday, November 22, 2019
1:00 p.m. EST

Are you one of the many people living with ALS who had genetic testing this year? Grab your genetic test report and sit down with Jennifer Roggenbuck, MS, CGC, Genetic Counselor at The Ohio State University Medical Center, to discuss what it all means. Common test outcomes, implications for family members, and next steps will be discussed.

ALS Clinical Trial Pipeline Series - Winter 2019
Thursday, December 12, 2019
2:00 p.m. EDT

Dr. Jeremy Shefner will review the ALS clinical trial pipeline and answer questions about the current state of clinical research.

Palliative Care in ALS Clinic
Thursday, January 9, 2020
12:00 p.m. EST

Given the complexity of issues accompanying an ALS diagnosis, professional organizations increasingly recommend that ALS patients and their families receive specialist palliative care services concurrent with clinic-based neurological multidisciplinary care. However, no broadly accepted guidelines define the optimal integration of palliative care into existing clinical frameworks. In fact, most patients with ALS may never interact with a specialist palliative care team at any point over the course of their disease. This webinar introduces palliative care into the ALS clinic and provides an understanding of its role and a framework into its integration in the care of ALS patients.

 
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