Three ALS Caregiver Resources to be Thankful For

This month, we’re sharing three outstanding ALS caregiver resources – Your ALS Guide, Sarah’s Caregiver Community, and I AM ALS -that we are thankful for and that you need to know about.

Your ALS Guide
This practical, easy-to-navigate website and Facebook community was designed for patients, family members, caregivers, and friends to answer questions, connect them to resources, save money, expand support networks, and generally make life with ALS a little easier. Content is continually updated and features guides to communication devices, power chairs and other supportive technologies, a national clinics directory, and discussions of pros and cons for clinical interventions along with profiles of caregivers, advocates, and patients.

“Your ALS Guide recognizes the central role that caregivers play and the many challenges they face. Our dedicated For ALS Caregivers section addresses caregiver burnout, self care, relationships, finding support, asking for help, and more,” says David Meissner, ALS Guide Director. “As one former caregiver told us, ‘I love Your ALS Guide because it’s one of the few places where people aren’t asked to do anything other than find what they need.’”  

Sarah’s Caregiver Community
Sarah Trott, a broadcast journalist and contestant on Season 25 of ABC’s The Bachelor, founded Sarah’s Caregiver Community after her father was diagnosed with ALS in 2016. After his diagnosis, Sarah temporarily left her journalism career be a caregiver and was inspired to advocate and support other ALS caregivers. Sarah’s Caregiver Community offers a private Facebook-hosted support group that connects caregivers and offers support, encouragement, and caregiver resources. Users must respond to a brief survey and agree to the rules of privacy and respect to join.  

I AM ALS
Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, after Brian’s 2018 diagnosis, I AM ALS is an advocacy organization revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers in Washington DC, and offering vital resources for people impacted by ALS. Brian, a former Obama campaign staffer, understood that advocating for increased research funding takes manpower and voices on Capitol Hill. But it’s difficult for patients, families, and caregivers to advocate from home.

I AM ALS seeks to change that with a vibrant grassroots community that shares caregiver resources, offers support, and helps patients, families, and caregivers take action by connecting with federal and state representatives and advocate for ALS legislation and funding.   

About SimpliHere

The mission of SimpliHere is to ensure efficient care and peace of mind for caregivers and their patients with neurological conditions that impact communication and mobility. Joanna Rosenberg founded SimpliHere to address communication gaps between caregivers and patients. Her personal experience when her mother lived with ALS exposed the challenges of communicating and understanding basic needs, as well as managing daily tasks. Download SimpliHere today!