Additional Resources

Additional Resources

In addition to what The ALS Association CT Chapter can provide, there are many additional non-profit organizations and other foundations that may be able to assist you, please review the list below.

ALS Finding a Cure: funding ALS Research to find a cure. http://www.alsfindingacure.org/

ALS ONE: Goal: finding a treatment or cure for ALS by the year 2020, while improving the care now for those currently battling ALS. http://www.alsone.org/our-story/

ALS Therapy Alliance: http://alstherapyalliance.org/

ALS Therapy Development Institute (ALS TDI): non-profit biotechnology research organization focused on finding treatments for ALS. https://www.als.net/

ALS Untangled: reviews alternative and off-label ALS treatments for ALS. www.alsuntangled.com

ALS Worldwide: 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 videoconference, email, online resources, phone, and in-person visits. http://alsworldwide.org/

Answer ALS: mission is to build the most comprehensive clinical, genetic, molecular & biochemical assessment of ALS, while openly sharing the results with the global research community. https://www.answerals.org/

Brigance Brigage: mission is to equip, encourage and empower people living with ALS http://www.brigancebrigade.org/

Compassionate Care ALS: supports people diagnosed with ALS, their families and communities as they navigate the complexities, both physical and emotional, associated with the disease. www.ccals.org

HARK: on a mission to share the real story of ALS and to provide a network of compassionate resources for families. http://www.hark-als.org/

HealthWell Foundation: The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. HealthWell Foundation has several disease funds, ALS being one of them. https://www.healthwellfoundation.org/

Hope Loves Company: Provides educational and emotional support to children and young adults who had or have family members with ALS. Hosts regional camps and other activities for children and families! www.hoplelovescompany.org

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

The Association for Frontotemporal Degeneration (AFTD): reliable information, valuable resources and support for people living with ALS/FTD https://www.theaftd.org/

The Susie Foundation: supporting families living with ALS in the New England Area www.thesusiefoundation.org

MAC Angels: provides services and programs to enhance the quality of life for patients, family members and caregivers who are impacted by ALS https://macangels.org/

Muscular Dystrophy Association (MDA CT Chapter): Please call 203 248-6500 for more information. www.mdausa.org

Project ALS: focusing on ALS research https://www.projectals.org/

Project Main Street: mission is to improve the quality of life for individuals afflicted with ALS www.projectmainst.org

Team Gleason: generates public awareness for ALS, raises funding to empower those with ALS to live a rewarding life, and ultimately find a cure. www.teamgleason.org

For Patient Support:

- Patients Like Me is a web page recommended by a number of people living with ALS. It is a place to share your own experience, make friends and to learn from others. www.patientslikeme.com/als/community

- Living with ALS: This was created as a companion to the living-with-als-Yahoo group site. It offers a variety of sections such as equipment reviews, do-it-yourself solutions to problems, recipes for patients with swallowing difficulties, remodeling, tips and links to other sites recommended by ALS patients. To subscribe, send a blank

e-mail to: www.living-with-als-subscribe@egroups.com

- ALS Untangled- reviews alternative and off-label ALS treatments for ALS. www.alsuntangled.com

- Your ALS Guide - Trusted tips, resources and information for your ALS journey www.youralsguide.com

For Caregiver Support:

- The ALS Association Care Connection The ALS Care Connection is a simple online tool that helps organize the community of people who want to help.

- Take them A Meal is also free of charge and is but specific to meal coordination. www.takethemameal.com

Children’s Resources:

- ALS Association: Youth Education and Support

- ALS Society of Canada

- Hope Loves Company Provide educational and emotional support to children and young adults who had or have a loved one battling ALS.

For Legal/Financial/Program Support:

- Agency on Aging/Community Choices is an aging and disability resource center with regional offices. Call 800-994-9422 or search online for specific regions.

- CT Living Will Documents: https://portal.ct.gov/AG/Health-Issues/Connecticuts-Living-Will-Laws

- CT Power of Attorney Documents: https://www.jud.ct.gov/lawlib/law/powersofattorney.htm

- Drazen Rubin Law Group- http://www.drazenlaw.com/ Contact Steven Rubin (203) 877-7511

o Provides legal assistance with long-term care planning

Augmentative and Alternative Communication:

- Hospital for Special Care : Kim Winter, MA CCC-SLP -Ph: 860-827-1958 x2035.

- Team Gleason : www.teamgleason.org

- Assistive Technology Exchange in New England www.getatstuff.org Toll-free in state, 800-537-2549

- National Family Caregiver Support Program assists with payment for assistive technologies for families caring for an individual 60+ years old. Call 800-994-9422.

For Durable Medical Equipment that you cannot access from ALSA CT's Loan Closet:

- Charlie’s Closet, located in Guilford but available to anyone, provides medical supplies and equipment on a loaner basis. They accept monetary donations for loaners. Charlie’s Closets accepts many equipment donations as well Call 203-453-8359.

http://givct.org/charlies-closet/

- Orphan Grain Train, located in Terryville, CT. Loans out and accepts various medical equipment donations. http://www.holytrinityterryville.org/orphan-grain-train/

For Home Modifications and Accessibility Options:

- A Place for Mom provides an extensive CT senior care directory including nursing homes, assisted living, senior housing and retirement communities. www.aplaceformom.com

- Bureau of Rehab Services If you are still employed this agency will pay for modifications to your home to enable you to continue working, including home modifications and ramping. www.brs.state.ct.us/programs.htm

- Centers for Independent Living provides assistance with home access, ramps, barrier free design, purchase of accessibility equipment and vehicle modifications. Call 860-656-0430 or www.cacil.net

- Connecticut Tech Act Project provides low-interest financial loans for home modifications and more. Call 860-424-5619 or www.cttechact.com/loan

- CARE NETWORK LINK for access to a variety of quality service providers.

(203)-495-165 or www.carenetworklink.org

- For Home Safety/ Home Modification Assessments in CT:

o Lifeway Mobility (860) 880-1822 or www.lifewaymobility.com

o Bullock Access (860) 870-7444 or http://bullockaccess.com/

o Collins Medical of Fairfield (888) 255-1333 or https://www.collinsmedical.net/accessibility.htm

For Veteran Support:

- The VA Medical Center in West Haven, CT provides multi-disciplinary ALS care to veterans living with ALS, in addition to coordinated the VA benefits veterans are entitled to. Please contact your ALSA-CT Regional Care Manager for assistance with contacting the VA Medical Center.

- The American Legion in Rocky Hill, CT is also available to assist with veterans with VA benefits.

Call 860-436-9986 for more information. www.ctlegion.org