To read this information in Spanish, click here.
Getting an ALS diagnosis, finding resources and information, and connecting with the right organizations can be overwhelming and difficult. For Spanish-speakers impacted by ALS, the addition of a language barrier can complicate the process and can become a seemingly insurmountable hurdle to accessing care. To discuss this situation and possible solutions, I AM ALS’ Many Shades of ALS team hosted two events in 2022 to bring the Hispanic ALS community together to explore how language impacts one’s access to healthcare, information, advocacy, and resources within the ALS landscape. The team also worked to compile Spanish language resources such as support groups, guides, and advocacy opportunities which are included below.
Organizations & Resources
- ALS Association Golden West Chapter – While the ALS Association’s Golden West Chapter serves California and Hawaii, their online resources and Spanish-language support groups are open and accessible to anyone across the country.
- ALS Association of Argentina – The ALS Association of Argentina’s website hosts a wide variety of information, resources, and events about ALS in Spanish.
- ELA/EMN page – The Spanish Association for the Support of Research and Protection of the Right of Patients Suffering from ALS. This site is a great resource if you just received your diagnosis or are looking to better understand what ALS is.
- adELA – Asociacion Espanola de Esclerosis Lateral Amiotrofica – Use the Spanish Association of Amyotrophic Lateral Sclerosis’ website to learn more about ALS, including the difference between familial and sporadic ALS and research updates.
- Fundela – Fundela shares an incredible wealth of information on symptoms, multidisciplinary aspects of treatments for ALS, and how multidisciplinary care can improve quality of life.
Hispanic community member stories
- Osiel Mendoza, living with ALS
- Juan Reyes, living with ALS
- Gill Garcia, living with ALS
- Julie Suarez, passed from ALS
- Miguel Young, passed from ALS
- Rafael Velazquez, family member of someone who passed from ALS
- Read more community member stories here
Get Involved!
- Join the I AM ALS Many Shades ALS Community Team, which brings attention to and provides resources for the mental, physical and social health of people of color living with and impacted by ALS.
- Share Your Story in Spanish or another language on the I AM ALS Story Wall
Send us additional Spanish-language ALS resources that we may have missed: outreach@iamals.org
Accessing Treatments & Trials
- Relyvrio: While there are no written or printed resources on Relyvrio in Spanish yet, you can reach out to the Amylyx Care Team and they will work with you and a language line to provide support and information. To reach out, click here or call 866-318-2989.
- Radicava: Learn more about Radicava and how to access it here.
- Riluzole: Learn more about Riluzole and how it could help you here.
- Qalsody: While there are no written or printed resources on Qalsody in Spanish yet, you can reach out to Biogen Support Services for assistance. To reach out, call 877-725-7639.
- Nuedexta: Learn more about Nuedexta and how it could help you here.
Note: I AM ALS does not offer Spanish-language support at this time. If you are seeking support in Spanish, please contact: Debbie Joy, Regional Care Manager, ALSA Golden West (djoy@alsagoldenwest.org, 562-741-8138).
