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Outreach and Inclusion Initiative


The I AM ALS Outreach and Inclusion Initiative was created to expand access to critical ALS support, resources and services, as well as increase ALS awareness in under-resourced communities. Our efforts are currently focused on people who identify as Black and/or African American and people/communities that are more than a 90 minute drive or 200 miles from an ALS clinic. Both of these communities historically and currently experience a lack of access to support services, appropriate care, and healthcare information and do not currently make up a large portion of the people of whom we support and reach.

Keep reading to learn how you can get involved, get connected to support, or join us in learning!

 

Get involved! Select an action below to make an impact:

Sign up to be an ALS Outreach Advocate

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The Many Shades of ALS Team

Join the team

Community Outreach Team

Join the fight

Looking for support? Get connected with resources, information and virtual events below:

Peer Support Initiative

Through our Peer Support Initiative, we can connect you with a person who has a similar connection to ALS as you, whether that’s race/ethnicity, gender, veteran status, gene status, caregiver status and more. 

 

ALS Support Groups

Our virtual support groups are hosted on Zoom. We have one for all people living with ALS, one for veterans living with ALS, and 3 different groups for caregivers and loved ones with varying connections to ALS – a bereavement group, one for primary caregivers and one for loved ones of someone living with ALS.

ALS Support Team

Our ALS Support Specialists work one-on-one with people impacted by ALS to help support and share custom resources for clients as they seek to better understand how to navigate living with ALS. From the moment you connect, our ALS Support Specialists are there for you. They’ll be your fierce advocates, resource specialists and listening partners. In addition to providing you with helpful information, access to resources and emotional support, they will regularly check in to make sure your wellbeing and needs are taken care of.

Online ALS Resource Center

Our online resource center is designed to be a one-stop shop for those impacted by ALS. We’ve worked closely with ALS community members to compile and create resources that would be most helpful to them and the next person diagnosed. 

Spanish Language ALS Resources

Getting an ALS diagnosis, finding resources and information, and connecting with the right organizations is difficult. For Spanish-speakers impacted by ALS, the addition of a language barrier complicates the entire process and can become a seemingly insurmountable hurdle to accessing care. The Many Shades of ALS team compiled Spanish language resources such as support groups, guides and advocacy opportunities, which are outlined on this webpage.

Our Collaborators

Join us in learning!

Where Research Meets Reality - Black in Neuro x I AM ALS

Pat Dolan's Geospatial Hub Maps

Dr. Chelsey Carter's writing and publications

NeuroRacism - Black in Neuro Week

I AM ALS Language Guide

Racism, Bias and Inequality within the ALS Landscape

Dr. Jonathan Jackson & Closing Remarks | Racism & its Implications in Clinical Research Workshop

Ask Me Anything ALS - Addressing ALS Communication Challenges


“I originally thought I would never be trached, at that moment, looking at my two daughters and husband, I decided that they needed me a little while longer and I would do whatever was necessary to be here for them. Deciding on a trach is an individual choice that we all must make. One choice is no better than another, it’s what is best for you and your family.” Chanel Hobbs – My Trach Story
“Imagine buying a brand-new house but without any of the excitement because it represents one of the most awful diseases on the planet. And while you are out looking for houses, your legs give out and you break your tibia and fibula. ALS did all that for me. And that was just the start.” Julie Suarez - Living with ALS
"David had just gone through a tough divorce and I had been laid off from work so I became his chauffeur, his errand boy and his advocate. I introduced myself to his pulmonologist as "Dave's hetero life mate." Mark Purvis - Former Caregiver
"We have four children. Our three youngest are adopted. Imagine finding your forever family, then finding out one parent has ALS. It’s devastating." Juan Reyes - U.S. Veteran Living with ALS
"I am a single mom who was diagnosed with ALS at age 32. I had to retire in 2017 from my career as a Nurse Practitioner. Losing my independence and ability to work have been my hardest losses. Although I am no longer working, I maintain my license and continuing education because I love learning and being a resource for others." Monique Green - Living with ALS
"I took the test because I knew it would be positive. I thought: “I take after my dad in so many things, why would this be any different?”
ALS does not discriminate against race or gender – We are Latinos. I lost my dad to ALS." Daughter, Familial ALS Family Member, C9 Gene Carrier
Lakeia and King’nazir Nard
"King’nazir Gates is five years old. He suffers from the sptlc2 gene mutation putting him under pediatric/juvenile ALS." Lakeia and King’nazir Nard - Caregiver and child living with ALS
"ALS is the Rodney Dangerfield of diseases. It gets no respect. Despite batting 1000 when it comes to deaths, albeit some of its victims get extra innings and other delays, no one has been cured nor has anyone survived the relentless scourge of ALS. You would think that is enough to command full respect from everyone. Sadly, that is not the case." James Clingman - Living with ALS
"My name is Osiel Mendoza. I was diagnosed with ALS On October 25th, 2016 at the age of 21. During the time that I was finishing college, building a future for myself, getting engaged, creating new goals, dreams and aspirations, I started getting muscle twitches and rapid weakness in my legs, feet and hands." Osiel Mendoza - Living with ALS

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Stories from ALS Community Members

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