November eNews
2019 Black, Red & White Gala
Even if you are not attending Saturday's Black, Red, & White Gale, you can still participate and win big! For every $50 donation, you will be entered to win one of two amazing prizes...

We jovially offer you the opportunity to win a once in a lifetime experience of Mardi Gras in New Orleans, LA in 2020. This trip includes two roundtrip flights to Louisiana along with three nights/4 day stay at LOEWS, one of Nola’s most lavish 4-star hotels featuring views of the Mississippi River and the New Orleans skyline.


Shine the light on your love with a stunning circle pendant from Thornton & Sons , complete with 14K yellow gold & .96 carats of diamonds that sparkle so bright either you, or the special lady in your life, will light up any room.

Click below for all the details!
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Therapy (SMART) Act, which would remove noninvasive ventilators from competitive bidding and require Medicare to update outdated coverage policies governing the use of noninvasive ventilators.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!
The Naturopathology of ALS: What can we Learn?
Wednesday, November 13, 2019
10:00am PST

Research experiments in ALS and other neurodegenerative diseases are highly dependent on the study of human nervous system tissues. 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
1:00 p.m. PST
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
11:00 a.m. PST
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.
How to Gain Access to VOCSN and Overview of Reimbursement Process

Wednesday, November 20, 2019
10:00 a.m. PST
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
10:00 a.m. PST
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.
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 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.
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.
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.