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Your Monthly eNewsletter from the ALS Network  |  April 2024

Celebrating Our Volunteers

April is Volunteer Appreciation Month, and the ALS Network, formerly the ALS Association Golden West Chapter, celebrates all who generously give their time and talents in support of the ALS community, this month and every month!

Our volunteers are remarkable - we will highlight many of these dedicated individuals throughout April - starting with a very special group of volunteers, our Board of Directors and Advisory Trustees.

We deeply appreciate all volunteers for all you do to support people facing ALS and to power our efforts to accelerate the search for effective prevention strategies, treatments, and cures for ALS.


Activities and Events in April

Each month, please visit our website to learn about upcoming activities and events. It is the best way to stay connected to what is happening with the ALS Network, including programs taking place online, and in your community!

Featured this month:

  • Throughout April: Join us for one or more of our Connect, Support, Chat Groups
  • Tuesday, April 9-Wednesday, April 17: 2024 Death Valley Ride to Cure ALS
  • Saturday, April 13: Training Ride for the 2024 SoCal Ride & Rally to Cure ALS
  • Sunday, April 21: Training Ride for the 2024 Napa Valley Ride, Walk & Roll to Cure ALS
  • Tuesday, April 23: ASK ME: Home Accessibility and Modification
  • Sunday, April 28: 2024 Jim Tracy 5K, Walk & Roll to Cure ALS

In The News

Be sure to visit the News and Stories section of our website—a valuable resource for timely updates about ALS, our community, and the ALS Network.

This month's headlines:

  • CNN: El reto del español Jaime Lafita: desafiar a la ELA en bicicleta por el Valle de la Muerte
  • Univision: Tiene ELA y atravesará el desierto del Valle de la Muerte en bicicleta: la inspiradora historia de Jaime Lafita
  • Washington Post: Failure of ALS drug puts a spotlight on controversial FDA approvals
  • ALS organizations collaborate, advocate for FY25 Congressional funding
  • Celebrating a Decade of Jim Tracy 5K, Walk & Roll to Cure ALS
  • ALS Network Statement about the Discontinuation of Relyvrio

New Resource for the ALS Community

April is Occupational Therapy Month, a time to honor these professionals for their essential role in multidisciplinary ALS care. Occupational therapists help people with ALS by offering specialized care and services in order to remain independent and maintain a higher quality of life. They also play a key role as members of our Certified and Recognized Treatment Centers of Excellence clinic teams.

Please see this helpful ALS Home and Daily Living Guide to help people living with ALS empower their care team, including occupational therapists with the knowledge, skills, and resources needed to provide the best care possible.


Meet Jaime Lafita

Jaime Lafita was born in Spain and worked as an economist and industrial entrepreneur until he was diagnosed with ALS in 2016. With his family and friends, he started the DalecandELA Foundation, to raise ALS awareness and funds to increase ALS research and help those living with it.

Jaime Lafita nació en España y trabajó como economista y empresario industrial hasta que le diagnosticaron ELA en 2016. Con su familia y amigos, fundó la Fundación DalecandELA, para crear conciencia sobre la ELA y recaudar fondos para ayudar a la investigación de la ELA y a quienes viven con ella.


Meet Cai Lei

Cai Lei was the vice president of a leading company in China until he was diagnosed with ALS in 2019. He has dedicated himself to fueling ALS research; founded a non-profit organization, AskHelpU; and established the world's largest patient-centered 360-degree life cycle ALS scientific data platform.

蔡磊先生在2019年被诊断出患有渐冻症(肌萎缩侧索硬化症)之前,曾担任京东集团副总裁。他致力于推动渐冻症研究;创立了非营利组织 “渐愈互助之家”;并建立了全球最大的以患者为中心的360度全生命周期的渐冻症科研数据平台。

了 解 更 多

Planning Your Future

April is National Financial Literacy Month. This tax season as you are reviewing your finances, please note that the ALS Network, formerly the ALS Association Golden West Chapter, offers resources that can support your financial literacy. Our free Estate Planning Guide is one tool that may help you as you consider the impact of your legacy.

It's always the right time to plan for your future, and the people and causes you care most about. For more information on how to provide for your family and support causes you care about, download our Estate Planning Guide today!


A trailblazer in ALS research

Richard Smith, MD, director of the Center for Neurologic Study, and member of the ALS Network’s new scientific advisory committee, wants to change the way drugs are developed for ALS and similar diseases. To accelerate the discovery process, he is advocating for funding moonshot ideas that are approved within months, if not weeks.


Attend ALS Summit & Flag Day

From May 29 - June 1, I AM ALS, the ALS Network, and other ALS nonprofit organizations, will host the first ALS Community Summit to discuss issues faced by the ALS community. The third annual ALS Awareness Month flag event will also occur, with thousands of flags on the National Mall, honoring people with ALS.


Lace Up for a Cause!

Join us for the 10th annual Jim Tracy 5K, Walk & Roll to Cure ALS on Sunday, April 28 in beautiful Golden Gate Park in the heart of San Francisco!

Celebrate a decade of community impact, in memory of San Francisco University High School’s beloved cross-country coach. Whether you conquer the 5K, take steps to save lives, or enjoy a roll through the park with family and friends, your participation will help advance the ALS Network’s urgent mission priorities.


Ride & Rally in SoCal!

Registration is open for the 8th annual SoCal Ride & Rally to Cure ALS on Saturday, May 4 at scenic Dos Vientos Park in Newbury Park!

This one-day community event is designed to appeal to every participant level and supporter of the ALS Network. Riders can count on support, gear vehicles, and route monitors. Participants and their loved ones will enjoy lunch, live music, and refreshing beverages. Join us as we ride, hike, walk, and roll for care, cures, and community.


Connection Groups

Our Connect, Support, Chat groups provide opportunities for people living with ALS and their loved ones to share their experiences and learn strategies for preserving independence and maximizing quality of life.


Clinical Trials

Find accurate and up-to-date information on both federally and privately funded clinical trial opportunities focused on ALS and other similar motor neuron diseases as well as other research studies.


Learning Opportunities

HEALEY ALS Platform Trial Webinar
Thursdays: April 11, 18, 25 at 2:00 PM PDT / 11:00 AM HST
Presented by Massachusetts General Hospital Neurology, you can choose to attend one or more of the Weekly Healey ALS Platform Trial Webinars.


ASK ME: Home Accessibility and Modification
Tuesday, April 23 at 5:00 PM PDT / 2:00 PM HST
Hear from Alisa Brownlee, ATP, CLIPP, CAPS, WSP, Assistive Technology and Home Modification Specialist at ALS United Mid-Atlantic. Alisa is also the founder of ALS AT Home, offering virtual home assessments for modifications and safety to those diagnosed with ALS and other progressive diseases.


NEALS: Constipation in People Living with ALS
Thursday, April 25 at 10:00 AM PDT / 7:00 AM HST
Join us for an insightful session with Dr. Ghazala Hayat, MD, FAAN, FANA, FAANEM, as we delve into the prevalence and challenges of constipation in people living with ALS, and how it might be connected to autonomic system problems.

ALS Network

Formerly the ALS Association Golden West Chapter

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