Chapter Newsletter
January 2019
Terry Bradshaw Teams Up with The ALS Association to Raise Awareness of ALS

This week we launched a new public awareness campaign featuring Hall of Fame quarterback and FOX Sports announcer Terry Bradshaw that raises awareness of ALS and the progress that has been made since the ALS Ice Bucket Challenge in 2014.
“ALS is a terrible disease that has taken far too many Americans, including several former NFL players,” said Terry. “I’m honored to be fighting for all those living with ALS and their family members. We desperately need the public’s support to keep the momentum going."

Team Challenge ALS

Grab a friend and join Team Challenge ALS in 2019! Combine your passion and commitment to finding a cure for ALS while achieving physical challenges through athletic events, such as marathons, triathlons, long-distance rides, swimming, and other endurance activities. You will get fit, make new friends, and change lives!

Contact Fundraising & Special Events Manager Stefanie Daniels at sdaniels@alssac.org or 916-979-9265 for more info
Legacy Society- Have you Thought About Planned Giving?
Your Footprints, Your Legacy

Everyone leaves footprints on the sands of time. Our prints are made of many things – our character, marks of accomplishment, acts of kindness, compassion, personal warmth, generosity and values.

Thoughtful estate planning is one means of making a print in the sand. Consider the effect of a plan that not only includes provisions for family members, but resources for charitable organizations like the ALS Association:  

An estate gift instills philanthropy. When you include the ALS Association as a beneficiary of your estate, you declare that services for people with ALS and finding a cure are two of your greatest values. What a way to leave your mark, while showing the importance of giving back to others.

An estate gift encourages imitation. Your gift may unlock gifts from other estates. As friends and family members witness what is accomplished because of your generosity, they may do the same as they plan their own estates. 

An estate gift provides needed funding. Estate gifts are unplanned revenue and can provide that extra boost to the budget that can make the difference between program/research advancement and retrenchment. 

Many estate gifts can provide you with income and tax saving benefits. A gift planning professional from the ALS Association can show you creative ways to make a gift and in return receive lifelong income and tax benefits. There are many IRS approved options to explore. Depending on your age, return rates can be as high as 9%. This service is provided without cost or obligation to ALS Association supporters.

Contact Executive Director Amy Sugimoto for more information at
asugimoto@alssac.org or 916-979-9265
The VA and ALS: An Overview for Veterans with ALS and Clinicians
Speakers: Christina Fournier, MD, MSc, Emory University, Atlanta VA Medical Center & Colin Quinn, MD, Penn Comprehensive ALS Center, CMJC VAMC ALS Multidisciplinary Clinic
Thursday, January 17, 2019
9:30am PST
Remembering Our Beloved Friend and Leader, Stephen Winthrop, Chair, The ALS Association Board of Trustees

It is with heavy hearts that we share that Stephen Winthrop, Chair of The ALS Association Board of Trustees and person with ALS, died peacefully early Monday morning. Our hearts are with his wife, Jane, and their two daughters.
Stephen was diagnosed with ALS on November 6, 2013. Stephen and Jane immediately began working to help raise awareness and support for the fight against ALS. They set up a Facebook page – WillWinAgainstALS – to “advocate, raise awareness, and fundraise to wipe out ALS!”

Projects We Funded in 2018 Accelerated Momentum Toward the Search for Treatments and a Cure

In 2018, many new research discoveries and collaborations accelerated the momentum toward finding treatments and a cure for ALS. We helped lead the way by awarding new grants to top scientists and clinicians all over the world.
SOD1 Phase I Antisense Trial Shows Promise and C9orf72 Phase I Antisense Trial Begins

The ALS Association is proud to be the first investor in antisense technology, dating back to 2004 when antisense was just an idea in Dr. Don Cleveland’s lab at University of California San Diego (UCSD).

The ALS Association Fights to Protect Health Care Access After Texas Ruling
The ALS Association joined 37 patient groups opposing a decision from a federal court in Texas that declared the Affordable Care Act (ACA) unconstitutional. The Texas v. United States decision is expected to be appealed to the U.S. Court of Appeals for the Fifth Circuit.
The ACA will remain in place during the appeals process, including:

  • Coverage protections for pre-existing conditions like ALS.
  • Essential health benefits, including coverage of prescription drugs, chronic disease. management, rehab and habilitative services, and mental health.
  • Coverage through Medicaid in states where the program was expanded.
  • 2019 health insurance plans purchased through the marketplace (HealthCare.gov).
Motor Neuron Excitability is Reduced in People with ALS Following Ezogabine Treatment

Dr. Brian Wainger from the Massachusetts General Hospital (MGH) presented initial top-level results from a recently completed phase II clinical trial of ezogabine (retigabine) on motor neuron excitability ( NCT02450552 ). The study, supported by The ALS Association, met its main goal of quantifying a reduction in motor neuron excitability in people with ALS following treatment. Results were presented during the 29 th International Symposium on ALS/MND in Glasgow, Scotland, last week.
Collaboration and Hope in Glasgow: A Look Back at the Annual ALS/MND Meetings and Research Symposium

We had the pleasure of joining ALS scientists, clinicians, health care professionals, industry and advocacy partners, and, most importantly, people with ALS and their families at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association last month. It’s always a great opportunity to come together and learn from each other.