Resources

I recommend scrolling through all the websites below to determine which organizations could be of benefit to you on your ALS journey. Some of the supportive topics include an overview of ALS, treatments, communication needs, medical equipment, insurance needs, caregiver support and educational tools. Hopefully, these will assist in navigating the complexities that come along with a diagnosis of ALS.

ALS Support Websites

ALS Mid Atlantic Association -Every region/state has their own ALS Association which offers Insurance navigation services, home modification and safety assessments, educational resources and more.

I Am ALS - Founded in 2019 by Brian Wallach who was diagnosed with ALS at the age of 37. I Am ALS is the largest patient-led advocacy movement by individuals who have been impacted by ALS. The I Am ALS team assists in empowering advocates to share their stories and volunteer in variety of ways from advocacy, to leading key initiatives to drive action to fund treatment and cures, as well as providing virtual peer-led individualized support, support groups and resources.

Team Gleason- Founded in 2011 by Steve Gleason former NFL football player for the New Orleans Saints. Steve was diagnosed with ALS at the age of 34. His foundation provides adventures, technology, equipment, virtual support groups and care services to those living with ALS.

Your ALS Guide- A guide for individuals and families who have been impacted by ALS. This guide provides trusted information, practical tips, educational videos, expert advice, helpful resources, and more - all in one place. This guide was created by Myna Stroth’s family who supported her through her ALS journey. A guide that they wish they had to make their ALS life journey a little easier.

Compassionate Care ALS - A nonprofit organization that supports people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities, both physical and emotional, associated with the disease. The organization provides resources, including equipment, educational opportunities, insurance assistance, guidance and awareness with regards to living with ALS. They offer a wide range of innovative and holistic approaches to meet individualized supports.

Her ALS Story- Networking for young women who have been diagnosed with ALS. By sharing their stories they strive to educate the public that ALS does not discriminate. People of all ages, races, locations, and genders can develop the disease. They advocate to deliver better therapies to ALS patients faster by supporting research and legislative initiatives.

ALS Together - ALS community for patients and caregivers to connect, share, and support each other in real-time by asking questions and receiving responses from their peers. Some of the channels include various topics such as, genetic variance, durable medical equipment, respiratory, alternative medicine to general support.

ALS Network -Offers educational webinars and unique virtual support groups.

ALS News Today- News and information about latest ALS science and research.

ALS Family of Faith - Christ centered support to individuals and families living with ALS.

Communication Resources

Bridging Voices -Assists with all communication interfaces with technology and voice banking and voice cloning.

Steve’s Way- Assists with learning iphone/ipad iOS accessibility features voice control, mouse control, head tracking and eye-gaze.

Insurance & Disability Resources

Applying for disability when you have ALS-SSDI information about applying for disability benefits.

Ticket to Work Program-Assists people in obtaining employment while maintaining disability benefits.

Medicaid -National health insurance program primarily for low income families and individuals that provides low-cost coverage.

Access Program -Free services for people living with ALS and other conditions that can help navigate Medicare and other social and economic challenges.

Medicare -Governmental healthcare program for seniors and disabled people most people living with ALS qualify for Medicare regardless of their age.

The ALS Medicare Resource Line -Free individualized case management assistance for people living with ALS. They can assist you in navigating eligibility and enrollment over the phone.

Are you looking for ways to get involved?

Are you Searching for a community to walk with you on your ALS journey?

Do you need support?

Click the link below to learn more!

Advocacy - Community - Supports

Life Hacks

While navigating through day to day tasks if I noticed a particular task became a source of frustration due my ALS progression, I would take time to pause and reflect to figure out viable solutions. These are some of the solutions I implemented to my environment to make my daily routine easier. I will continue to add solutions here as I adapt my environment to meet my changing needs.

Click on the links below.

*I do not receive any royalties for the Products listed. These are the products that have work for me.

Electronic Solutions

iPad Floor Stand iPhone Table Clamp iPhone Kindle Table/Desk Stand Charging Station 20 ft Device Charging Cord With Multi Ports Kindle eReader eReader Page Turner Multi Port Charging Station Low Profile Wireless Mouse Magnetic Wireless Keyboard Case Alexa Echo Amazon Smart Plug Alexa Fire Stick Universal TV Remote App Headphones With Mic Wireless Speaker