August eNews
2019 Walk to Defeat ALS - Saturday, October 5th
If you are passionate about creating a world without ALS, we want to talk to you! We're looking for community members to join our movement to put an end to ALS by becoming a Team Captain at the 2019 Walk to Defeat ALS. More than an event, the Walk to Defeat ALS brings hope to families living with ALS by supporting them on every front—care services, research, and advocacy—it’s the #1 way to unite and fundraise for those living with ALS.
It’s fun—the day is filled with family friendly activities, live music, comradery, and courage.
It’s easy. You’ll be assigned a personal coach to help you every step of the way. 
More importantly, you’ll be supporting our quest for a cure, while helping families living with ALS in your community.  
Click below to sign up. For more information, or to schedule an appointment to meet your personal coach, please contact Stefanie Daniels at or 916-979-9265 ex. 2
Walk Launch Party
When you join the Walk to Defeat ALS, you also get an invitation to our exclusive Launch Party at Sammy’s Restaurant & Bar! Join us and other supporters of the ALS community for an afternoon of fun, but hurry—the RSVP date is August 19 th !
Please confirm that you’ll be joining us by contacting Stefanie Daniels at (916) 979-9265 or We can’t wait to celebrate Walk season and our incredible community with you!
CYCLEBAR Fundraiser
Join us on September 7 th at CYCLEBAR in Roseville to raise funds and awareness to end ALS. Your support will help the ALS Association provide vital care services within our community, while we seek a cure for this devastating disease. Funds raised through this event will benefit the 2019 Walk Team the Pink Martinis in honor of Shelly Hoover. 

For more information on CYCLEBAR click here

To make a gift to the Pink Martini's click here
2019 Black, Red & White Gala
Join us on November 9th to honor ALS heroes while raising funds to support research, public policy, and services that directly improve the lives of families living with ALS in our community. The Studio 54 themed Black, Red & White Gala offers guests a festive evening filled with a gourmet dinner, fondue bar, 70's themed cocktails, silent and live auctions, DJ, dancing and special live music guests The Cheeseballs. Please click here to get more information on tickets and corporate sponsorship opportunities.
Country Fest to Beat ALS
Do you love wine and country music? Join us for County Fest to Beat ALS at Campos Family Vineyards on Saturday, September 28 th ! The evening will include live performances by Coffey Anderson and Jeff Rickets and the Dirt Road Band, live and silent auctions, and the release of the newest label in the Campos Give Back Wine Series: Quinney’s Blend. This event honors the memory of Campos family friend Patrick “Quinny” Ornellas, who lost his battle with ALS 10 years ago, and proceeds benefit The ALS Association Greater Sacramento Chapter.

Purchase your VIP or General Admission tickets by clicking here .
Citrus Heights Ribbon Cutting Ceremony
On Friday, July 26 th, the Citrus Heights Chamber of Commerce hosted a ribbon cutting ceremony at the Chapter Resource Center to welcome The ALS Association Greater Sacramento Chapter to the community. We were honored by their warm welcome, and by the show of support from Councilwoman Porsche Middleton and representatives from the offices of Congressman Ami Bera, Senator Jim Nielsen, Assemblymember Ken Cooley. We look forward to continuing to serve the ALS community and welcoming all who want to learn more about ALS to our new space.
Accelerating Therapy Development and Expanding Access

Friday, August 9, 2019
9:00 a.m. PST

An update on targets and treatments in development will be shared. In addition, Dr. Cudkowicz will share information on the Healey ALS Platform Trial – the first adaptive Master Protocol trial initiative in ALS.
Emergency Preparedness For People Living With ALS

Monday, August 19, 2019
11:00 a.m. PST
Plan ahead. Severe weather, power outages, or medical emergencies pose unique challenges to those living with ALS. Join us for an overview of key items to include in your emergency preparedness plan.
ALS Ice Bucket Challenge Five-Year Anniversary
Five years ago, the ALS Ice Bucket Challenge soaked the world, generating 17 million social media posts and raising $200 million dollars worldwide. Money raised through the Challenge significantly accelerated ALS research, doubled the size of The ALS Association’s clinical care network, and funded the development of assistive technology and other care services for people living with the disease. To commemorate the fifth anniversary of the Challenge, we’re asking for your help to finish what was started five year ago.
Throughout August, repost your original ALS Ice Bucket Challenge video – or take a new challenge – and invite your friends to do the same. Together, we can end ALS forever.
CNN Shines Light on "Iron Horse Tour" of MLB Ballparks
CNN featured a profile on Larry Falivena, a person living with ALS since 2017. Larry is visiting all 30 Major League Baseball parks in one season to raise awareness of ALS as part of The ALS Association’s Challenge Me campaign. He began his “Iron Horse tour” on May 30.
Orphazyme Clinical Trial Hits Full Enrollment

Orphazyme has fully enrolled its Phase 3 clinical study of arimoclomol in amyotrophic lateral sclerosis (ALS). The Danish biopharma company hit full enrollment ahead of schedule due in large part to the efforts of the global ALS community who put out the word to people living with ALS. 
Mallinckrodt Halts Phase 2b Acthar Gel Trial

Mallinckrodt is permanently halting its Phase 2b PENNANT Study (MNK14042068) investigating the safety and efficacy of a hormone injection for the treatment of ALS. 
Acthar Gel is a highly purified preparation of Adrenocorticotropic hormone (ACTH) injected either beneath the skin or into the muscle.