ALS
Office Hours

ALS Office HoursALS Office HoursALS Office Hours
  • Home
  • About
  • Request a Session
  • Contact Us
  • Calendar
  • Resources
  • More
    • Home
    • About
    • Request a Session
    • Contact Us
    • Calendar
    • Resources

ALS
Office Hours

ALS Office HoursALS Office HoursALS Office Hours
  • Home
  • About
  • Request a Session
  • Contact Us
  • Calendar
  • Resources

Resources

Please reach us at Contact@officehoursals.com if you cannot find the answer you need.

ALS Society of Canada      https://als.ca/

   The ALS Society of Canada works with the ALS community to improve the lives of people affected by ALS through support, advocacy and  investment in research for a future without ALS.


ALS Association           https://www.als.org/

   Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.

Helpful links on the Association website:
  About Familial ALS and Genetic Testing: www.alsa.org/als-care/resources/publications-videos/factsheets/genetic-testing-for-als.html
  Living with ALS Resource Guides: www.alsa.org/als-care/resources/publications-videos/resource-guides/


ALS Finding A Cure           https://www.alsfindingacure.org/

   ALS Finding a Cure has created a series of videos to help ALS patients and their loved ones better understand the disease and the resources/support that will be needed as the disease progresses. In the video series, you will hear from individuals living with ALS, their spouses, healthcare providers and professionals who shed light on the impact this disease has on one’s life. This series will touch on some of the most common and relevant aspects of living with this illness, whether it be you or a loved one. It is their hope that these videos will empower you to be proactive about understanding and managing ALS.


ALS Forum          https://www.alsforums.com/

    A volunteer-driven support group launched in 2003. Our members are affected by ALS and share their experiences to help others better deal with this disease.
 

ALS Hope Foundation          https://www.alshf.org/

   The mission of the ALS Hope Foundation is to accelerate the search for a cure for ALS. The Foundation supports care and services at the MDA/ALS Center of Hope.


ALS One          https://alsone.org/

   A partnership of world leaders in Amyotrophic Lateral Sclerosis (ALS) research and care who have joined forces to help cut bureaucratic red  tape to combat the disease more efficiently and effectively for all.  


ALS United - Mid-Atlantic          https://alsmidatlantic.org/

   ALS Mid-Atlantic covers the South Central PA, North Central PA, Southeastern PA, Central & Southern NJ, and Delaware.  Their mission is to unite and empower the ALS community through a collaborative approach to fostering bold research initiatives, advancing national and state advocacy, and providing comprehensive care and support to individuals and families affected by ALS. 


ALS Untangled     https://www.alsuntangled.com/

      ALS Untangled reviews alternative and off label treatment with the goal of helping people with ALS make more informed decisions about them.


ALS Worldwide      https://alsworldwide.org/ 

     ALS Worldwide is a nonprofit organization that provides free guidance and support to thousands of people living with ALS and their loved ones in the USA and more than 150 countries via email, online resources and phone. We seek to help people live better and longer with ALS.  


CCALS (Companionate Care for ALS)      https://ccals.org/ 

    The organization provides resources including equipment, educational opportunities, insurance and Medicare assistance, guidance and awareness with regards to living with ALS and their caregivers. Their focus is 


CReATE Therapies for ALS          https://create.rarediseasesnetwork.org/

   The goal of the Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium is to advance therapeutic development for sporadic and familial forms of amyotrophic lateral sclerosis (ALS), frontotemporal dementia (FTD),

primary lateral sclerosis (PLS), multisystem proteinopathy (MSP), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The CReATe consortium aims to support this goal through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers. 


EverythingALS           https://www.everythingals.org/

   EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF), a 501(3)c organization. Their mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers.


Her ALS Story      https://heralsstory.org/

    Her ALS Story seeks to raise awareness that ALS impacts young women diagnosed before 35 and provide a community for them to connect, learn from each other, and find support so they can live their best lives. 


Hop on a Cure     https://www.hoponacure.org/  

    John Driskell Hopkins (aka Hop) is a founding member of the Zac Brown Band.  Hop on a Cure's mission is to support research to prevent, reverse, and cure ALS while raising awareness, building a compassionate community, and unleashing the healing power of hope. 


Hope Loves Company          https://www.hopelovescompany.org/

   Hope Loves Company (HLC) is the only non-profit in the U.S. with the mission of providing support, resources and community to children who have or had a loved one with ALS.  They give children and young adult caregivers the tools they need to navigate grief, find joy, and remain hopeful.


IAMALS                       https://www.iamals.org/

     A patient-lead organization that promotes advocacy, support groups, and resources.


International Alliance of MND/ALS Associations          https://www.als-mnd.org/

   The Alliance is a global network of ALS/MND associations informed by PALS/CALS, that builds capability for its members and connects to external stakeholders


Les Turner ALS Foundation            https://lesturnerals.org/

   The Les Turner ALS Foundation is the Midwest's leading ALS organization. Their support services team helps people living with ALS receive the best quality of care and access to the most promising therapies.  Their online support groups, educational resources, and webinars reach an international audience. 

Spanish link on the Les Turner site

   https://es.lesturnerals.org/ela-y-la-comunicacion/


MAC Angles Foundation          https://www.macangels.org/

    The mission of MAC Angels Foundation is to enhance the quality of life for patients, family members and caregivers impacted daily by ALS, by providing the compassion, education and unique resources needed to manage the devastating effects of this disease.​ Their service areas are New York, New Jersey and the Connecticut areas. 


National Institute of Health (NIH) - Library of Medicine for ALS  https://medlineplus.gov/amyotrophiclateralsclerosis.html

   Comprehensive overview of ALS provided by MedlinePlus, a service of the U.S. National Library of Medicine.


PatientsLikeMe        https://www.patientslikeme.com/join/als   

   PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real-world and accelerate the discovery of new, more effective treatments.


ROON                         https://www.roon.com/

     A trusted guide to basic questions from what is ALS to medications; trials; etc. Check the site often as content is constantly being added. Is also available on iPhones.


Your ALS Guide         https://www.youralsguide.com/

     An online guide to help you navigate the changes and challenges of everyday life.


NoLimbits      https://no-limbits.com/

MagnaReady Clothing        https://magnaready.com/

Billy Footwear        https://billyfootwear.com/

Silvert         https://www.silverts.com/

Buck & Buck        https://www.buckandbuck.com/

IZ Adaptive        https://izadaptive.com/ 

Tommy Hilfiger        https://usa.tommy.com/

Kohl’s        https://www.kohls.com/catalog/adaptive.jsp?CN=Feature:Adaptive 

JCPenney        https://www.jcpenney.com/g/shops/adaptive-clothing-and-accessories?id=cat11100002883

Sock Aid        https://www.amazon.com/RMS-Deluxe-Sock-Foam-Handles/dp/B00U9TWCXU 


Accessible Cutting Board - Amazon

   https://www.amazon.com/s?k=disability+cutting+board&crid=15BS5PV1KG306&sprefix=disability+cutting+%2Caps%2C141&ref=nb_sb_ss_ts-doa-p_1_19


Autobrush      https://tryautobrush.com/pages/accessible-brushing-disability

    autobrush is designed to be accessible to all people, bringing better oral care to kids, adults, and persons with disabilities.


Les Turner: Making Activities of Daily Life Easier 

   https://lesturnerals.org/support-services/als-learning-seriesmaking-activities-of-daily-life-easier-in-als/ 


No Drill Grip Bars      https://www.nodrillingrequired.com/GRIPP-Series-Mounting-Hardware-p/gb00002-ndr.htm


Obi Adaptive Feeding System     https://meetobi.com/ 

   Obi is a revolutionary adaptive eating device for individuals with upper extremity strength and mobility limitations. Through the use of customizable accessibility switches, Obi allows the user to control what they eat and when! 


Offset Utensils        https://www.especialneeds.com/shop/daily-living-aids/offset-utensils.html 


Right Angle Cutting Knife 

   https://www.amazon.com/ABLE-T-Approved-Certified-Occupational-Therapist/dp/B08PY8BC39/ref=sr_1_5?crid=KP9XN7623CCI&keywords=right+angle+knife&qid=1703014044&sprefix=right+angle+knife%2Caps%2C193&sr=8-5


Your ALS Guide - Home Safety      https://www.youralsguide.com/als-home-safety.html



As with any new technology or adaptive device, please consult your ALS Clinic.


Boogie Boards        https://myboogieboard.com/collections/shop-products


Tobii – eye gaze technology        https://www.tobii.com/

   Tobii began more than 20 years ago when they delivered the world’s first remote eye tracker. Since then, they've been on a mission to build technology that understands human attention and intent — what we call attention computing.


Eye Gaze        https://eyegaze.com/

   Providing the world’s leading eye tracking and eye-controlled technology since 1988

Our passion to help individuals communicate and connect with their loved ones has empowered us to develop the world’s best eye tracking hardware and software. Dedicated design features and algorithms developed for people with various eye conditions enable our eye trackers to handle a wide range of individuals with superior accuracy and consistency.


GlassOuse      https://glassouse.com/

   GlassOuse Assistive Device has been designing and developing technologies to assist people with physical disabilities and limited mobility to access basic technology like everyone else.


Bridging Voice        https://bridgingvoice.org/ 

    We enable and empower people with neurodegenerative disorders to communicate by removing the barriers between them and assistive technology. 


Project RELATE      https://sites.research.google/relate/

     Project Relate is an Android app designed to help people with speech impairments be better understood in conversation, as well as when interacting with Google Assistant.

Project Relate is currently in beta. To use the app, you must first apply to participate as a tester. The application form is in the app. You may be accepted to join immediately, or you may have to wait.


WEBINARS

ALS Association 

   Voice Preservation: Voice Banking and Message Banking-What You Need to Know

https://www.youtube.com/watch?v=S-s1TIZbKAU


I AM ALS - Eye Gaze Webinars

   Eye Gaze Panel - Part I     https://www.youtube.com/watch?v=T8Ui8woBzcU

   Eye Gaze Panel - Part II    https://www.youtube.com/watch?v=l9Gr5Fn2WKs


Les Turner Foundation

   An Overview of Voice and Message Banking for People Living with ALS

https://www.youtube.com/watch?v=GMwuxuv9J20&t=18s



Honey Badgers, an Advocacy Collective

         https://www.facebook.com/the.honeybadger.collective 

   The Honey Badgers Advocacy Collective is a group of motivated advocates that meet each week to share projects and find ways to support each other.  


I AM ALS      https://www.iamals.org/action/

   Community Outreach Team - https://www.iamals.org/action/community-outreach-team/

       To engage, educate and empower ourselves and others for the purpose of creating better care, treatments and cures for ALS. 

   Legislative Affairs Team - https://www.iamals.org/action/legislative-affairs-team/

       To empower and support the ALS community in their legislative advocacy efforts. We strive to build a team of passionate revolutionaries who together will develop meaningful relationships with federal legislators to secure public policies that will expand access to clinical trials, accelerate ALS therapies, eliminate access barriers and support those living with ALS and their loved ones.



Always speak with your respiratory therapist before ordering any device; most are covered under insurance but check with your ALS Clinic first


Your ALS Guide - Respiratory Guide       https://www.youralsguide.com/respiratory.html

 

Trilogy BiPap        https://helpmedicalsupplies.com/collections/trilogy-bipap-machines 


Chin Strap      https://www.amazon.com/dp/B0BHYHFT82?starsLeft=1&ref_=cm_sw_r_apan_dp_G4BYHXDWVT2RJN73JYP7


YCare Program       https://globalneuroycare.org/ycare-program/

   A skills and support program for children and youth who provide care for persons living with an illness or injury.


Luki & the Lights      https://globalneuroycare.org/luki-the-lights/

     How to explain ALS/MND to young children.

 


Before starting any exercise program, please reach out to your neurologist or All Clinic Team member.


LUNA Physical Therapy at Home       https://www.getluna.com/ 


AllTrails        https://www.alltrails.com/?ref=header   

   Once at the website, click on EXPLORE and then SUITABILITY and select WHEELCHAIR FRIENDLY and will give you a list of accessible trails in your area.


Looking for an accessible outing - check out your local Botanical Gardens / Zoo / Museums 


In our journey with ALS, we will be confronted with the decision of using a feeding tube to help maintain proper nutrition and enhance our quality of life. As part of the ALS care planning process, people with ALS should discuss the various options with their multidisciplinary care team, weigh the pros and cons, and understand how their decision may impact their overall health. The links below can assist in those discussions.


ALS Association - Feeding Tubes: 10 Things to Know      https://www.als.org/blog/feeding-tubes-10-things-know


 


Accessibility Services, Inc.      https://accessibilityservices.com/ 

  Accessibility Services Inc (ASI) looks to help those with severe disabilities such as ALS and spinal cord injuries regain they independence by providing next generation environmental control and AAC solutions.  


ALS Partnership w PAF (Patient Advocate Foundation)     

https://www.patientadvocate.org/ 

   For complex financial or insurance issues, the ALS Foundation pays them to support anyone anywhere in the country with ALS, including a special provision to ensure navigators from other ALS organizations can refer to them as well.


HARK ALS      https://hark-als.org/

    HARK provides assistance to alleviate the financial burdens faced by families battling ALS. They offer support in many ways including:  purchase or donate a handicap accessible van to a pALS; purchasing equipment not covered by insurance; pay travel expenses for pALS to visit family or attend an important family event they would not otherwise be able to afford; visit communities across the country sharing Hope on the Horizon increasing awareness of ALS and benefitting a local ALS family; provide financial assistance for household expenses; assist families with children during the holidays; provide assistance with home modifications; etc. Based in New Jersey and Florida.


I AM ALS – financial resources      https://iamals.org/get-help/

   A helpful list of all ALS organizations in the United States that provide ALS assistance. They are grouped by the type of services they provide and what areas they serve (ie, caregivers, legal services, equipment, etc)


Team Gleason      https://teamgleason.org/ 

   To improve life for people living with ALS by delivering innovative technology and equipment, as well as providing and empowering an improved life experience.


CCALS - Compassionate Care ALS     https://ccals.org/

   A nonprofit organization with a mission to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities associated with the disease. The organization provides resources including equipment, educational opportunities, insurance and Medicare assistance, guidance and awareness with regards to living with ALS, and caregiving. 


Live Like Lou      (https://www.livelikelou.org/)

   Their mission is to create and connect communities to stimulate emerging ALS research and uniquely support families affected by Lou Gehrig’s disease. 


MAC Angels      https://www.macangels.org/

    The mission of MAC Angels Foundation is to enhance the quality of life for patients, family members and caregivers impacted daily by ALS, by providing the compassion, education and unique resources needed to manage the devastating effects of this disease.​ Serving the New York tri-state area.


Matt’s Place Foundation      https://www.mattsplacefoundation.org/ 

   Matt’s Place Foundation was created to assist people living with ALS and their families by providing hope, housing, and assistance to families living with ALS in the Washington State area. They have a library of videos and resources discussing home modifications and have built several fully accessible homes in Washington, Idaho, and Montana.  Check out their YouTube channel for videos on renovations (https://www.youtube.com/@MattsPlaceFoundation) 


NeedyMeds      https://www.needymeds.org/

    NeedyMeds is a dedicated nonprofit organization committed to improving access to affordable healthcare for individuals in need. With a passionate team we strive to make a meaningful difference in the lives of those facing healthcare challenges. 


ALS Canada Gene Hub      https://als.ca/research/genehub/

   The ALS Society of Canada (ALS Canada) is committed to a future where anyone living with ALS, or with a known genetic risk of ALS, understands how genetics may impact them. We aim to provide accurate and relevant information, as well as pathways to action for those who wish to access genetic care. 


ALS Association (America)   https://www.als.org/understanding-als/who-gets-als/genetic-testing

     With advances in technology and the development of gene-targeted therapies, knowing whether your ALS has an underlying genetic cause – and if so, identifying the disease-causing mutation – has become more important. However, the decision whether to get a genetic test is a very personal one. By clicking the link above, they can answer some common questions about genetic testing for ALS so you can start to think about whether it might be the right choice for you.  A genetic counselor can help you work through the pros and cons of genetic testing,  



Allvibrant Upright Walker      https://allvibrantwalker.com/products/allvibrant-upright-walker-stand-up-walker?gad_source=1


Electric Chair Lift /Floor Lift      https://www.amazon.com/MAIDeSITe-Electric-Chair-Raised-Weight/dp/B09JGBCN8C

  


Les Turner - Hospice & Palliative Care for People with ALS webinar 

   https://lesturnerals.org/support-services/als-learning-serieshospice-palliative-care-for-people-with-als/


NEALS (Northeast ALS Consortium) - Educational Series - Palliative Care for People with ALS

   https://neals.org/people-living-with-als/educational-webinars/palliative-care-for-people-with-als


Connecting ALS  (ALS Association)       https://connectingals.org/

   Apple / Google / Spotify

A weekly podcast for the community of people living with ALS.  The podcasts have been temporarily on hold but the previous sessions are quite informative.


CReATe ALS Untangled      https://create.rarediseasesnetwork.org/resources/patients-families/create-podcasts#untangled

   Apple / web

Allison Bulat, the co-chair of the patient education and advocacy committee for NEALS, and Dr. Richard Bedlack, professor of neurology and director of the ALS Clinic at Duke University and founder of ALS Untangled, discuss ALS Untangled reviews. It is the aim of ALS Untangled and its multinational team to scientifically review some of the many alternative and off-label treatments for ALS in order to help people make more informed decisions. Click the link above to see to a list of these interviews and then click on the title to see a summary of the episode along with the recording. 


The Endpoints Podcast (ALS TDI)     https://www.als.net/endpoints/

    The Endpoints Podcast features guests from the ALS community, including people living with ALS, researchers, advocates and fundraisers. Each episode cuts to the chase with short, digestible conversations about the latest research at ALS TDI and the most closely watched ALS clinical trials as well as stories from people living with ALS with their thoughts on research, healthcare and their journey with ALS. 


Everything ALS     https://www.everythingals.org/podcasts

   Spotify / YouTube

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts -- from care to cure -- for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies.


I'm Dying to Tell You          https://imdyingtotellyoupodcast.com/

    A podcast created by Lorri Carey is designed to share stories of inspiration and create a supporting community around them. 


Living While Dying - An ALS Story (Minnesota Public Radio - NPR)        (Apple podcasts) 

https://podcasts.apple.com/us/podcast/living-while-dying-an-als-story/id1005831954

   Bruce Kramer lived a remarkably rich life because of – not despite – an incurable, always fatal disease: Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease. He was diagnosed with ALS December 6, 2010. While the disease diminished his body, it expanded his life and spirit. He shared that experience with Minnesota Public Radio News host Cathy Wurzer over nearly five year of conversations. 


Navigating Life with Amyotrophic Lateral Sclerosis (by Mark B Bromberg & Diane Banks Bromberg)

https://www.amazon.com/Navigating-Amyotrophic-Lateral-Sclerosis-Neurology/dp/0190241624


Amyotrophic Lateral Sclerosis – A Guide for Patients and Families (by Hiroshi Mitsumoto)

https://www.amazon.com/Amyotrophic-Lateral-Sclerosis-Patients-Families/dp/1932603727


I AM ALS book recommendations

https://iamals.org/books-about-als/


ALS Ride for Life book recommendations

https://alsrideforlife.org/about-als/recommended-reading/


ALS Therapy Development Institute (ALS TDI)          https://www.als.net/   

   ALS Therapy Development Institute (ALS TDI) is the largest drug discovery lab in the world focused solely on finding treatments for ALS. A good  source for information about research, clinical trials and forums on ALS topics/issues.   


ALS GEOSPATIAL HUB      https://als-geospatial-hub-nonprofit.hub.arcgis.com/

    The ALS Geospatial Hub gathers authoritative data from federal agencies, research institutions, and non-profit organizations by geography. We then analyze this data to find barriers in accessing care, find environmental risk factors linked to ALS, and develop policy maps to support neurodegenerative disease legislation. The results of these analyses are then shared as maps to embed, storymaps to explain, and map layers to further analyze the data. This work is done by volunteers (The Mappers) who are GIS professionals, ALS researchers, and ALS advocates. 


Answer ALS      https://www.answerals.org/

    Answer ALS is a global project dedicated to developing and implementing a unified strategy to stop Amyotrophic Lateral Sclerosis (ALS) through an aggressively funded agenda. We achieve change through unifying our global community toward agreed upon goals in research, science, technology and education. 


CDC (Center for Disease Control) ALS Registry      https://www.cdc.gov/als/

    The National ALS Registry is a program to collect, manage and analyze data about persons with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among people with ALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials. Persons living with ALS can add their information to the Registry.


CReATe Therapies for ALS and Related Disorders   https://create.rarediseasesnetwork.org/

    The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium will enroll patients with sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers. 


Light The Way Study      www.lightthewaystudy.com

    We're a group of scientists, advocates, and entrepreneurs committed to serving the ALS community.  All too often those at risk of ALS are forced to navigate the physical and emotional pain of a diagnosis alone, whilst shouting to be heard and seen by the medical community. That's why we've developed Light the Way, a multi-language online platform equipped to support those at risk of genetic forms of ALS. Take your place in the fight against ALS, when you join our community.


NEALS (Northeast ALS Consortium)     https://neals.org/

    NEALS' mission is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.

To achieve our goal, NEALS functions as an academic research consortium and a resource for the ALS community. Learn more about our structure.


Project ALS     https://projectals.org/ 

   Project ALS identifies and funds the most promising scientific research that will lead to the first effective treatments and a cure for ALS. We recruit the world’s best scientists and doctors to work together—rationally and aggressively—to develop a better understanding of the ALS disease process and, in parallel, better therapeutic strategies.  


Target ALS      https://www.targetals.org/

    Over the more than 150-year period since ALS was first described, little progress was made due to our lack of knowledge of the nervous system and of the disease itself. In the last two decades, a veritable explosion of promising basic science took place, including the discovery of new ALS genes and new candidate therapeutic targets. 


Social Security Disability Insurance       https://www.ssa.gov/disability/disability.html 

   You should apply once you become disabled. There is no waiting period if your disability results from amyotrophic lateral sclerosis (ALS).


ALS Guide to Medicare Open Enrollment 

   https://www.als.org/blog/navigating-medicare-open-enrollment-and-health-insurance-challenges-getting-help-you-need 


IAMALS - Navigating the VA with ALS

   https://www.iamals.org/get-help/navigating-the-va-with-als/#:~:text=If%20you%20are%20a%20veteran,continuous%20days%20of%20active%20duty


Paralyzed Veterans of America (PAV)      https://pva.org/ 

   Paralyzed Veterans of America is the only nonprofit Veteran Service Organization dedicated solely to helping Veterans with spinal cord injuries and disorders (SCI/D), and diseases, like MS and ALS.  


Veterans Affairs - How to Apply for VA Healthcare

   https://www.va.gov/health-care/how-to-apply/



I AM ALS 

https://iamals.org/action/join-a-support-group/ 

   To enroll in their weekly virtual support group, click on the link above and register. Once registered, you will receive an email to join the call via Zoom.


Everything ALS 

https://www.everythingals.org/events

   They have both presentations and “Fireside Chats” that you can register and participate in. They also have a YouTube channel where you can watch past presentations (https://www.youtube.com/c/everythingals). 


Your local ALS Association

   Your local ALS Association will have monthly support meetings – some are in-person, some are virtual, some do both. Check your local chapter. To find your local chapter, go to https://www.als.org/support/states. 


Eye Gaze Support Group 

Meets every Tuesday – to sign up go to https://us06web.zoom.us/meeting/register/tZ0tduqqrz4pEtTGoUU5LBmITF0QIDGItUvR#/registration 


AccessibleGO         https://accessiblego.com/

   One stop shop for all your disability travel needs.


IAMALS - Transportation and Travel

   https://www.iamals.org/get-help/#adapt-to-living-with-als-transportation-and-travel-with-als


John-boy's Place          https://windchimeresources.com/

   In memory of John Porter Gafford who bravely fought ALS for over two years.  John-boy's Place is a fully accessible and equipped home where all details are geared toward getting families together, making new memories, and easing caregiver concerns...with a view. 


Sage Traveling      https://www.sagetraveling.com/

    The friendly Europe accessible trip planners at Sage Traveling use their expertise in European accessible travel to create custom accessible holidays for people with all types of mobility issues, including wheelchair and scooter users, cane and walker users, and senior travelers.  


Wheel the World        https://wheeltheworld.com/

   Making travel accessible; Explore the world without limits


Wheelchair Getaways - Van Rentals      https://www.wheelchairgetaways.com/

    Wheelchair Getaways is dedicated to providing quality rental vans with handicap-accessible features. Our organization is committed to improving the accessible transportation options for people requiring adaptive equipment for mobility. 


Check the Local ALS Association Loaner Closet at your destination for equipment you can borrow rather than bring with you.


Accessories

Airplane or Car Head Strap      https://www.amazon.com/dp/B0758TY861?_encoding=UTF8&psc=1&ref_=cm_sw_r_ud_dp_8GD3DCXAH2X17CS30CTE


Transfer Sling for Air Travel      https://www.amazon.com/dp/B08QDF821M?starsLeft=1&ref_=cm_sw_r_apan_dp_STD8CKTYGPAD0R7QDD7R

    Transfer belt For lifting wheelchair user 


Travel Straw      https://www.amazon.com/dp/B07ZBZ6CCC?starsLeft=1&ref_=cm_sw_r_apan_dp_04HSJJZ02PHY9TS652CW&th=1


Keeping Eyeglasses in Place      https://www.amazon.com/dp/B07R5H7BXV?starsLeft=1&ref_=cm_sw_r_apan_dp_YEQGTP84AW4NRZ20K9SN&th=1



DISCLAIMER:  ALS Office Hours makes no representations whatsoever about any other website that you may access through this site. When you access a non-Office Hours website, please understand that it is independent from Office Hours, and that ALS Office Hours has no control over the content of that website. In addition, a link to a non-Office Hours website does not mean that ALS Office Hours endorses or accepts any responsibility for the content, or the use, of the linked website nor do we receive any compensation or sponsorship. It is up to you to take precautions to ensure that whatever you select for your use or download is free of such items as viruses, worms, Trojan horses, and other items of a destructive nature. If you decide to access any of the third party websites linked to this website, you do this entirely at your own risk. 



Copyright © 2024 ALS Office Hours - All Rights Reserved.

 Office Hours is run by a team of volunteers committed to assisting the ALS community.  

They do so as individuals, not as representatives of any organization they may be associated with


This website uses cookies.

We use cookies to analyze website traffic and optimize your website experience. By accepting our use of cookies, your data will be aggregated with all other user data.

Accept