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    • #17107
      Amanda
      Keymaster

      We have some great organizations that are there specifically to raise funds for ALS, and to advocate for better funding, medical care, mental health care and research. Many also advocate for and help individual pALS.  They need our support and the support of our friends and family.  It is important to be part of the solution! Have you gotten involved?

      https://www.youralsguide.com/resource-list.html

      The information below is from the website listed above

      ALS clinics across the United States have teams of multidisciplinary professionals who support and guide ALS patients throughout the progression of the disease. ALS clinics may be stand-alone clinics, or they may be housed within the neurology departments of public or private hospitals, universities, or the VA.

      The ALS Association funds research and advocates for public policy changes on a national level. On a local level, chapters across the country provide free support services such as loaning out equipment, coordinating support groups, and sponsoring clinics.

      The Muscular Dystrophy Association (MDA) provides support services for families affected by muscular dystrophy, ALS, and related diseases. MDA has ALS Care Centers, an equipment-loan program, ALS-specific support groups, and educational materials.

      The ALS Society of Canada is Canada’s leading ALS support organization. Its website includes a manual for people living with ALS and booklets for helping children and teens cope.

      I AM ALS is a patient-led organization that raises awareness, funds research, provides resources, and creates opportunities for patients to lead the fight against ALS. I AM ALS Navigator is a free service that connects you over the phone or online with a person who can answer your logistical questions, connect you to resources, and provide emotional support.

      Team Gleason helps provide cutting-edge technology, equipment, services, and travel experiences to people with neuromuscular diseases or injuries. It was founded by former New Orleans Saints player, Steve Gleason, who was diagnosed with ALS in 2011.

      Hope Loves Company (HLC) is a nonprofit organization that provides emotional and educational support to children and teens whose lives have been affected by ALS. HLC coordinates family fun days, a weekend retreat, care packages, and a hotline.

      The LiveLikeLou Foundation raises money for ALS research, supports Hope Loves Company summer camps, and provides partial college scholarships for dependents of people living with ALS.


      Regional ALS Organizations

      ALS in the Heartland is an organization that provides support to families in Nebraska and western Iowa that have been affected by ALS. Founded in 2006, ALS in the Heartland provides a respite care grant program, an equipment loan program, and a team of volunteers who can help with chores, errands, and yard work. People with ALS are paired with a social worker who can offer emotional support, answer questions, advocate on their behalf, and connect them to local resources.

      ALS of Michigan is a nonprofit organization that has supported people with ALS and their families in the state of Michigan since 1978. ALS of Michigan offers home visits, equipment loans, support groups, respite care, counseling, education, workshops, and more. It also has a dedicated Augmentative and Alternative Communication Center.

      Compassionate Care ALS (CCALS) is a Massachusetts-based nonprofit organization that supports people with ALS, their families, health professionals, and communities. CCALS loans equipment and wheelchair-accessible vans, provides assistance with Medicare and Medicaid, coordinates in-home medical services, offers emotional support, hosts workshops, and has a retreat center.

      The Joe Martin ALS Foundation is a North Carolina-based organization that provides many support services at no cost, including caregiver training, 3-6 hours of in-home care per week, home assessments, wheelchair-accessible transportation to appointments and events, support groups and workshops, a camp for children whose lives have been affected by ALS, and a network of volunteers who can help families with meals, errands, and home projects.

      The Les Turner ALS Foundation is an independent organization that provides a local community of support for families affected by ALS in the Chicago area. Founded in 1977, the Les Turner ALS Foundation conducts research, operates an ALS clinic, and provides extensive support services, including individualized care, support groups, equipment loans, education, events, and grants.

      MAC Angels is a nonprofit organization that provides support services to families affected by ALS in New York, New Jersey, and Connecticut. MAC Angels offers home visits, loaner equipment, transportation to clinic visits, support groups, emotional support, and help navigating the healthcare system.


      Veterans Organizations

      The U.S. Department of Veterans Affairs provides extensive service-connected benefits for military veterans with ALS.

      The Paralyzed Veterans of America is a veterans services organization with local chapters around the country that can explain your benefits, guide you through the application process, submit your paperwork, and be your liaison to the VA.

      The American Legion is a veterans service not-for-profit organization that can help veterans and families understand and apply for benefits.


      Research and Treatment

      NEALS is an academic research consortium, contracted research organization, and resource tool for the ALS community that hosts educational webinars, an annual Clinical Research Learning Institute, and more.

      The ALS Therapy Development Institute is the world’s first and largest nonprofit biotech focused 100% on ALS research. It provides up-to-date information on current research. Augie’s Quest was founded by fitness industry mogul, Augie Nieto, who was diagnosed in 2005. Augie’s Quest directly funds the ALS Therapy Development Institute.

      The National ALS Registry is a database that collects information from volunteers with ALS to help scientists work toward a cure. The Registry has been funded by Congress since 2008 and is operated by the Centers for Disease Control (CDC).

      ClinicalTrials.gov is a government website that helps you locate privately and publicly funded ALS clinical trials.

      Project ALS identifies and funds promising research that could lead to effective treatments and a cure for ALS. It encourages researchers from multiple disciplines to share data and collaborate.

      Patients Like Me is a health information sharing website for patients with different conditions, including ALS. On the website, patients can share their real-world experiences, ask questions, and connect with and learn from others who have the same condition. All of this shared information is used by researchers as data to develop more effective treatments.

      ALSUntangled is a trustworthy website that can help you make sense of alternative/off-label ALS treatment options, such as supplements, that you may find advertised online. ALSUntangled has dozens of completed reviews with letter grades that can help you make more informed decisions.


      Health Care, Benefits, and Insurance

      Social Security Disability Benefits (SSDI) explains disability benefits and how to apply.

      Medicare is the government health-care program for seniors and disabled people. Most people with ALS qualify for Medicare, regardless of age.

      Medicaid is the national health insurance program primarily for low-income families and individuals that provides free or low-cost coverage.

      Long-term Care through Medicaid offers state-run programs that can help pay for long-term, non-medical care for some individuals. Eligibility guidelines are different than Medicaid’s health insurance program.

      HealthCare.gov is the website for the Affordable Care Act that helps you search for and compare private health insurance plans in your area.

      COBRA is the federal program that allows you (and your family) to remain on your same insurance plan for up to 18 months after employment ends.

      FMLA (Family and Medical Leave Act) is the federal policy that provides certain employees with up to 12 weeks of unpaid, job-protected leave per year.

      Medicare Rights Center is a nonprofit customer service organization dedicated to helping seniors and people with disabilities navigate the Medicare system.

      A.C.C.E.S.S. Program is a free service for people with ALS and other chronic conditions that can help you navigate Medicare and other social and economic challenges.


      Online Support and Coordination Tools

      Care Connection is an ALS Association program that can help you launch, organize, and mobilize your community of support.

      Lotsa Helping Hands is an online care calendar that helps you coordinate support and arrange help from others.

      CaringBridge is a popular website that helps you create your own website to connect with, rally, and coordinate support from your community.

      Meal Train is a website that coordinates meal deliveries from your family, friends, and community.

      Caring Info is a website from the National Hospice and Palliative Care Organization that provides general information and suggestions for caregivers.

      Facebook has a number of active ALS caregiver groups that can provide support, answer questions, and connect you with others who understand what you are experiencing. Search for “ALS caregiver” groups.

      ALS Forums is an online, volunteer-moderated forum and support group for people affected by ALS.​


      For More Information

      ALS News Today is a news and information website that posts daily about the latest ALS science and research news.

      ​The National Institutes of Health (NIH) website has trusted facts about ALS from the nation’s medical research agency.

      Living with ALS Resource Guides is a set of 11 comprehensive guides developed by The ALS Association that you can read, download, and print at no cost.

      • This topic was modified 1 year, 11 months ago by Amanda.
    • #17120
      Marianne Opilla
      Participant

      Thank you Amanda for these EXCELLENT resources!

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