Overview

 

The ALS Association is a national organization dedicated to fighting ALS on every front, including research, patient and community services, public education, and advocacy.

Patient and Caregiver Grants

 

• • Program Overview: The ALS Association offers various grant programs to provide direct financial assistance for expenses not covered by insurance or other programs.

• • Grant Types:

     

    • • Care Assist Grants: Helps with costs associated with daily living activities, such as hiring home health aides or personal care attendants.
    • • Activities of Daily Living (ADL) Grants: Provides funding for assistive devices and equipment not covered by insurance, like wheelchairs, ramps, or hospital beds.
    • • Transportation Grants: Covers expenses related to medical appointments, including accessible transportation services when needed.

• • Eligibility Criteria:

     

    • • Diagnosed with ALS by a qualified neurologist.
    • • Financial need demonstrated through income verification and documentation of expenses.
    • • Residency requirements may vary by chapter (contact local chapter for details).

• • Application Process:

     

    • • Contact your local ALS Association chapter for specific application details and deadlines. You can find your local chapter https://www.als.org/support/states.
    • • Required documents typically include medical records, proof of diagnosis, income verification, and cost estimates for needed equipment or services.

• • Review and Approval Process:

     

    • • Applications are reviewed by a committee within the local chapter.
    • • Decisions are based on eligibility criteria, funding availability, and urgency of need.
    • • Timelines for approval vary by chapter, but applicants can expect a response within a few weeks.

Equipment Loan Program

 

• • Program Overview: Provides essential medical equipment and assistive devices at no cost to ALS patients, eliminating the financial burden of purchasing these items.

• • Equipment Examples: Wheelchairs, hospital beds, ventilators, communication devices, and other durable medical equipment (DME).

• • Eligibility Criteria:

     

    • • Diagnosed with ALS.
    • • Documented need for the requested equipment.
    • • May require a referral from a healthcare professional.

• • Application Process:

     

    • • Contact your local ALS Association chapter https://www.als.org/support/statesfor details on equipment availability and application procedures.

• • Equipment Loan Details:

     

    • • Equipment is loaned, not donated, and must be returned to the chapter upon request or when no longer needed.
    • • The ALS Association is responsible for maintenance and repairs of loaned equipment.

Respite Care Program

 

• • Program Overview: Offers financial assistance to caregivers for short-term relief services, acknowledging the physical and emotional demands of caring for someone with ALS.

• • Financial Assistance:

     

    • • Varies by chapter and funding availability.
    • • May cover costs associated with in-home care, adult daycare services, or temporary stays in respite care facilities.

• • Eligibility Criteria:

     

    • • Caregiver for someone diagnosed with ALS.
    • • Financial need for respite care services.
    • • Documentation of caregiving responsibilities may be required.

• • Application Process:

     

    • • Contact your local ALS Association chapter https://www.als.org/support/statesfor application details and eligibility requirements.

Additional Financial Assistance Programs

 

• • Home Modification Grants: Provides financial support for necessary home modifications to accommodate mobility limitations, enhancing the patient’s living environment.

     

    • • Examples of modifications include widening doorways, installing ramps, or adapting bathrooms for accessibility.

• • Communication Device Support: Offers funding for communication devices and technology that assist patients in maintaining independence and quality of life.

     

    • • Examples include speech-generating devices, eye gaze technology, or communication software.

Collaboration for Additional Support

 

• • Local Chapter Support: Local ALS Association chapters may offer additional financial resources and personalized support specific to your region. It’s crucial to contact your local chapter https://www.als.org/support/states to explore all available options.

• • Partnerships: The ALS Association collaborates with other organizations and foundations that provide complementary financial assistance to ALS patients. These partnerships can offer additional resources beyond the ALS Association’s programs.

Financial Planning and Advisory Services

 

• • Educational Resources: The ALS Association offers various resources and guides on financial planning for ALS patients and their families. You can find these resources on the ALS Association website https://www.als.org/.

     

    • • Topics may include budgeting for ALS care, managing insurance benefits, and navigating government assistance programs.

• • Professional Advisory Services: Information on accessing professional financial advice and counseling services may be offered through the ALS Association or its partner organizations.

Advocacy for Financial Support

 

• Insurance Advocacy: The ALS Association can assist patients with navigating complex insurance claims and disputes, aiming to maximize benefits for ALS care.
• Legislative Advocacy: The ALS Association advocates for policies.

Overview

The primary focus of ALS Guardian Angels is on raising awareness about ALS, providing emotional support to patients and families, and connecting them with resources that can help manage the disease. Although ALS Guardian Angels does not offer direct financial assistance programs to ALS patients, they offer multiple avenues for receiving help.

Resource Connection

• ALS Guardian Angels website: The website serves as a comprehensive resource hub for ALS patients and families. It provides information on various topics, including:

  • Government Programs: Information on government programs that may offer financial benefits to ALS patients, such as Social Security Disability Insurance (SSDI) and Medicare.

• Patient Support Network: ALS Guardian Angels fosters a network of patients, caregivers, and volunteers who can share experiences and offer emotional support. This network may also be a valuable source of information on available financial resources from individuals who have gone through the process.

Additional Resources

• ALS Guardian Angels Website: https://www.guidestar.org/profile/26-2671920

Important Notes

• While ALS Guardian Angels doesn’t provide direct financial assistance, their website and network can be valuable resources for ALS patients and families seeking information and support on managing the financial burden of ALS.
• It’s recommended to explore all available options, including government programs, other non-profit organizations, and fundraising opportunities.

Overview

The Angel Fund is a patient assistance charity that helps individuals with various chronic and rare diseases, including ALS. However, it’s important to understand the program’s limitations and eligibility criteria.

Program Overview

• • The Angel Fund provides financial assistance to patients with chronic and rare diseases to help them afford out-of-pocket medical expenses, including:
    • • Copayments for medications and treatments
    • • Deductibles
    • • Coinsurance
    • • Certain out-of-network medical bills

Eligibility Criteria

• • Diagnosed with a chronic or rare disease, including ALS.

• • Must have commercial health insurance (not Medicare or Medicaid).

• • Meet income eligibility requirements. The Angel Fund has specific income thresholds based on household size. You can find their income eligibility guidelines on their website.

• • Must be a resident of the United States (including Puerto Rico and Guam).

Application Process

• • Applications are submitted online through the Angel Fund website (https://theangelfund.org/)

• • Required documents typically include:
    • • Proof of diagnosis (doctor’s letter or medical records)
    • • Proof of health insurance coverage (insurance card and/or Explanation of Benefits (EOB) statements)
    • • Proof of income (paystubs or tax returns)
    • • Itemized medical bills or cost estimates

Important Notes

• • The Angel Fund is a charity with limited resources.
  • Funding is not guaranteed, and there may be waitlists for assistance.
  • The Angel Fund  does not provide direct cash payments. They pay grants directly to the healthcare provider or pharmacy on the patient’s behalf.
  • The Angel Fund may not cover all out-of-pocket expenses. There may be limitations on the amount of assistance provided and the types of expenses covered.

Overview

Assistance Funds is a national charity focused on health-related emergencies. While they don’t offer programs specifically for ALS, they may provide temporary financial assistance for unexpected medical bills associated with ALS care.  However, it’s important to understand the limitations of their program.

Program Benefits

• Assistance Funds offers one-time grants to help individuals facing unforeseen medical expenses due to accidents, illnesses, or natural disasters.
• Funds are not guaranteed and depend on available resources.
• Assistance Funds prioritizes critical medical needs. While ALS care can be very expensive, they may prioritize emergency situations or procedures deemed life-saving.

Eligibility Criteria

• U.S. citizen or permanent resident.
• Must demonstrate a financial hardship caused by a recent medical emergency or illness, including ALS-related expenses.
• Documentation is required to verify your situation.

Application Process

• Applications are submitted online through the Assistance Funds website https://tafcares.org/.
• Required documents typically include:

  • Proof of medical emergency or illness (doctor’s letter or medical bills)
  • Proof of financial hardship (paystubs, tax returns, or other documentation)
  • For ALS patients: Documentation linking the financial hardship to ALS care expenses (e.g., bills for equipment, medications, or in-home care)

Important Notes

• Assistance Funds is a charity with limited resources. They receive many requests for assistance, and funding is not guaranteed.
• They typically offer one-time grants and may not be a long-term solution for managing ALS care costs.

• The amount of assistance awarded varies depending on the severity of the situation and available funding.

Overview

While Chive Charities doesn’t offer a specifically designated financial assistance program for ALS patients, they have provided grants to ALS patients in the past through their individual funding campaigns.  

Mission and Funding

• Chive Charities is the philanthropic arm of the online entertainment platform theCHIVE. They raise funds through various online campaigns to support individuals and families facing different hardships, including medical bills.
• Funding for each campaign is unique and depends on public donations. There is no guaranteed amount of assistance provided through Chive Charities.

Potential Assistance for ALS Patients

• ALS patients can create individual fundraising campaigns on the Chive Charities website to raise money for medical bills and other ALS-related expenses.
• The success of an individual campaign depends on factors like the compelling nature of the story, community engagement, and social media sharing.

How to Apply

• Individuals can submit their stories and requests for assistance through the Chive Charities website https://chivecharities.org/.
• There is no specific application form, but detailed instructions and guidelines are available on the website.

Important Notes

• Chive Charities prioritizes funding for veterans, military families, and first responders. While they have funded ALS patients in the past, ALS is not a specific area of focus.
• There is no guarantee that an ALS patient’s campaign will be selected for funding.
• It’s important to explore other financial assistance options designed specifically for ALS patients.

Overview

Founded by former NFL player Steve Gleason, Team Gleason focuses on providing innovative technology, equipment, and services to individuals living with ALS. While Team Gleason doesn’t offer direct financial grants, they focus on providing financial relief through specific equipment and technology initiatives.

Equipment Assistance Programs

• Team Gleason House: Provides financial assistance for technology integration into homes, creating smart home environments that enhance independence and safety for people with ALS.

  • Examples of funded technology include voice-activated controls for lights, thermostats, and appliances, along with automated door locks and smart speakers.

• Gleason Equipment Lending Closet: Offers a lending program for various durable medical equipment (DME) to ease the financial burden of purchasing essential items.

  • Examples of loaned equipment include wheelchairs, hospital beds, communication devices, and other assistive technology tools.

Technology Scholarship Program

• Program Overview: Provides scholarships to cover the cost of assistive technology devices that are not typically covered by insurance, such as eye gaze systems, communication devices, and specialized software.
• Eligibility Criteria:

  • Diagnosed with ALS.
  • Financial need demonstrated through income verification and documentation of expenses.
  • Must reside in the United States.

• Application Process:

  • Applications are submitted online through the Team Gleason website https://teamgleason.org/.
  • Required documents typically include medical records, proof of diagnosis, income verification, and a letter of recommendation from a healthcare professional outlining the need for the requested technology.

• Selection Process:

  • Applications are reviewed by a committee based on eligibility criteria, financial need, and the potential impact of the technology on the applicant’s life.

Additional Resources

• Team Gleason Patient Navigation: Provides patients and families with information and guidance on navigating the ALS journey, including access to financial resources. This may include connecting patients with other organizations that offer financial assistance programs.

  • You can contact Team Gleason Patient Navigation for assistance at https://teamgleason.org/need-assistance/ or by calling 1-800-958-5872.

• Team Gleason Advocacy: Team Gleason advocates for policies that improve access to affordable healthcare and technology for people with ALS.

Important Notes

• Team Gleason’s financial assistance programs have specific eligibility criteria and may have waitlists due to funding limitations.
• It’s recommended to contact Team Gleason directly to discuss your specific needs and explore all available options.

Additional Resources

• Team Gleason Website: https://teamgleason.org/
• Team Gleason Patient Navigation: https://teamgleason.org/need-assistance/

Overview

The HealthWell Foundation offers a specific program to assist ALS patients with managing healthcare costs associated with their condition. 

ALS Fund

• Program Overview: Provides copayment or premium assistance for ALS patients on Medicare to help them afford treatment and manage out-of-pocket healthcare costs.
• Eligibility Criteria:

  • Diagnosed with ALS (Amyotrophic Lateral Sclerosis).
  • Enrolled in Medicare Parts A and B.
  • Household income at or below 500% of the Federal Poverty Level (FPL). You can find the FPL guidelines here: https://aspe.hhs.gov/topics/poverty-economic-mobility/poverty-guidelines
  • Must be a resident of the United States.

• Grant Details:

  • Offers grants up to $15,000 per patient over a 12-month period.
  • Funds can be used for copayments, deductibles, premiums, and certain out-of-pocket healthcare expenses related to ALS treatment.
  • Patients may be eligible to reapply for a second grant within 12 months, depending on funding availability.

• Application Process:

  • Applications are submitted online through the HealthWell Foundation website https://www.healthwellfoundation.org/fund/amyotrophic-lateral-sclerosis/.
  • Required documents typically include proof of ALS diagnosis, Medicare enrollment documentation, income verification documents, and a letter of medical necessity from a healthcare professional.

Important Notes

• The ALS Fund is specifically designed for ALS patients on Medicare. Patients with other insurance plans are not eligible for this program.
• The HealthWell Foundation offers financial assistance for a variety of diseases, and ALS is just one of them. Funding may be limited, and there may be waitlists for grants.
• It’s advisable to explore other financial assistance options offered by the ALS Association, Team Gleason, or other organizations.

Overview

The Les Turner ALS Foundation, located in Chicago, Illinois, provides comprehensive care and support to people with ALS and their families. While they don’t offer direct financial grants like the ALS Association, they do offer various financial assistance programs to help manage the high costs associated with ALS care.

Equipment Loans and Grant Programs

• Program Overview:  Provides financial assistance for essential equipment and home modifications not covered by insurance, easing the financial burden on patients and families.
• Equipment Loan Program:

  • Offers a large inventory of durable medical equipment (DME) for loan at no cost to patients.
  • Examples of loaned equipment include wheelchairs, hospital beds, ventilators, communication devices, and other assistive technology tools.
  • Patients are responsible for the care and maintenance of loaned equipment while in their possession.

• Grant Programs:

  • The Les Turner ALS Foundation offers several grant programs to help cover the costs of equipment and home modifications not covered by insurance or loan programs.
  • Specific grant programs and eligibility criteria may vary.
  • Examples of grants may include:

    • Walter Boughton Foundation Support Services Grant: Provides financial assistance for equipment and home modifications not covered by insurance.
    • Dan Nelson Respite Grant: Offers grants for short-term respite care services, allowing caregivers a break from their caregiving duties.

Application Process

• Contact the Les Turner ALS Foundation directly at 847-679-3311 or mailto:[email protected] for information on specific grant programs, eligibility criteria, and the application process.

 Additional Financial Assistance

• Stuart Rosen ALS Transportation Fund: Provides grant assistance to help cover transportation costs to and from ALS clinic appointments at the Lois Insolia ALS Clinic at Northwestern Medicine. This program is particularly helpful for patients who rely on others for transportation or require accessible transportation services.

Collaboration for Additional Support

• Social Workers and Care Coordinators: The Les Turner ALS Foundation social work and care coordination team can connect patients and families with other organizations and resources that offer financial assistance programs specific to their needs.

Important Notes

• Financial assistance programs offered by The Les Turner ALS Foundation may have limitations and may require submitting applications demonstrating financial need.
• It’s recommended to contact the foundation directly to discuss your specific situation and explore all available options.

Additional Resources

• The Les Turner ALS Foundation Website: https://lesturnerals.org/
• Patient and Family Resource Guide to ALS: https://lesturnerals.org/trusted-resources-to-learn-about-als/ (This guide provides a comprehensive overview of the foundation’s support services, including financial assistance programs)
• Contact Information:

  • Phone: 847-679-3311
  • Email: mailto:[email protected]

Overview

NeedyMeds is a valuable resource for people with ALS, but it doesn’t directly offer financial assistance programs. However, it provides crucial information and tools to help ALS patients find and access medications at a lower cost.

Assists low-income individuals with obtaining essential medications they cannot afford.

(Toll-Free Number: 800-503-6897)

https://www.needymeds.org/

NeedyMeds Services for ALS Patients

• Patient Assistance Programs (PAPs): NeedyMeds offers a searchable database of Patient Assistance Programs (PAPs) sponsored by pharmaceutical companies.

  • These programs may provide free or low-cost medications to qualified patients who meet certain income and insurance criteria.
  • NeedyMeds allows you to search for PAPs by specific medication or disease category (ALS). This can be a valuable starting point to find financial assistance for prescribed medications.
  • Link: https://www.needymeds.org/

• Diagnosis-Based Assistance: NeedyMeds has a dedicated ALS Resource Page that provides information and links to various resources for ALS patients, including financial assistance programs.
• NeedyMeds Drug Discount Card: NeedyMeds offers a free discount card that may help reduce the cost of some medications at participating pharmacies. While not specific to ALS medications, it can be a helpful resource to explore alongside other options.

  • Link: https://www.needymeds.org/drug-discount-card

• Information and Education: NeedyMeds provides educational resources about medication affordability, insurance coverage, and navigating the complexities of prescription drug costs. This knowledge can empower ALS patients to make informed decisions about their medication needs.

Important Notes

• NeedyMeds is a valuable tool for ALS patients seeking information and resources to manage medication costs.  While it doesn’t provide direct financial assistance, it can be a crucial starting point for exploring various options and finding programs that can help make medications more affordable.  
• It’s important to combine NeedyMeds resources with other financial assistance programs specifically designed for ALS patients.

Overview

The Patient Access Network Foundation (PAN) primarily connects patients with medication assistance programs offered by pharmaceutical companies. While PAN itself doesn’t offer direct financial grants for ALS patients, it can be a valuable resource to help them access ALS medications at a reduced cost.

PAN Patient Assistance Programs

• Program Overview: PAN connects patients with Patient Assistance Programs (PAPs) offered directly by pharmaceutical companies.

  • These programs provide eligible patients with free or low-cost medications for various chronic illnesses, including ALS.

• Eligibility Criteria:

  • Diagnosed with ALS and prescribed a medication covered by a PAP.
  • Eligibility for each PAP varies depending on the specific medication, income level, and insurance status.

• Benefits:

  • Patients may qualify to receive their ALS medication for free or at a significantly reduced cost.
  • PAN helps patients navigate the application process for each PAP.

How PAN Assists ALS Patients

• Medication Search Tool: The PAN website offers a search tool to help patients find PAPs for specific medications, including those used to manage ALS symptoms. https://www.panfoundation.org/
• Patient Advocate Support: PAN has a team of patient advocates who can assist ALS patients with navigating the application process for PAPs. Patients can contact PAN by phone at 1-866-531-2947 or through the online contact form https://www.panfoundation.org/.
• Additional Resources: PAN provides educational resources about PAPs and how they can help patients afford their medications.

Important Notes

• PAN doesn’t offer direct financial grants or assistance for non-medication related expenses.
• Each PAP has its own eligibility criteria, and not all ALS medications will be covered by a PAP.
• Patients may need to apply for assistance programs from multiple pharmaceutical companies to cover all their ALS medications.

Overview

 

The Patient Advocate Foundation (PAF)  doesn’t offer direct financial grants to ALS patients. However, they provide valuable financial assistance through their case management services for patients with chronic, life-threatening illnesses like ALS.

 

(Toll-Free Number: 844-244-1306)

 

https://www.patientadvocate.org/

PAF Case Management Services

 

• • Program Overview: PAF offers free, personalized case management services to ALS patients and their families.

• • Services Provided:

     

    • • Financial Assistance Navigation: PAF case managers can help ALS patients navigate the complex healthcare system to identify and access all available financial resources. This includes exploring options offered by:

         

        • • Government programs (Medicare, Medicaid, etc.)
        • • Private insurance plans
        • • Charitable organizations (ALS Association, Team Gleason, etc.)
        • • Patient assistance programs offered by pharmaceutical companies

    • • Insurance Advocacy: PAF case managers can assist patients with resolving insurance claim denials and appeals, ensuring they receive maximum benefits for ALS treatment.
    • • Benefit Counseling: PAF can help patients understand their Medicare and Medicaid benefits and explore options for maximizing coverage for ALS-related expenses.
    • • Connection to Community Resources: PAF can connect patients with local resources that offer financial assistance for living expenses, transportation, and other needs.

Eligibility Criteria

 

• • Diagnosed with ALS by a qualified healthcare professional.

• • Uninsured or underinsured (having high out-of-pocket costs).

• • Facing financial hardship due to ALS.

Application Process

 

• • Contact the ALS Association or PAF directly to inquire about case management services.

     

    • • ALS Association: https://www.als.org/ – You can find your local chapter here: https://www.als.org/
    • • Patient Advocate Foundation: https://financialaid.patientadvocate.org/ – Call their toll-free number at 1-800-532-5277 to inquire about case management services in your area.

• • There is no formal application process, but patients will likely be asked to provide documentation of their diagnosis, insurance coverage, and financial situation.

Additional Resources

 

• • Patient Advocate Foundation Website: https://financialaid.patientadvocate.org/

• • ALS Association Financial Assistance Programs: https://www.als.org/support/programs/financial-assistance-program

• • Medicare Coverage for ALS: https://www.als.org/navigating-als/financial-information/signing-up-for-medicare

Important Notes

 

• • PAF case management services are not a guaranteed source of direct financial assistance.

• • The focus is on helping patients navigate existing financial resources and maximize their insurance coverage.

• • Availability of case managers may vary by location, so contacting your local ALS Association chapter or PAF is crucial.

Overview

The National Organization for Rare Disorders (NORD) is a valuable resource for ALS patients, but it doesn’t directly offer financial assistance programs. However, NORD provides a comprehensive platform to explore various financial aid options for ALS and other rare diseases.

NORD’s Role for ALS Patients

• Patient Assistance Resource Center (PARC): NORD’s PARC is an extensive online database that serves as a central hub for patients with rare diseases to find financial assistance programs.

  • The PARC allows you to search for programs based on your specific diagnosis (ALS), location, and insurance type.
  • You can find the PARC here: https://rarediseases.org/patient-assistance-programs/

• Educational Resources: NORD offers various educational resources on navigating the complexities of rare diseases, including information on insurance coverage, financial planning, and government assistance programs.

  • These resources can empower ALS patients and their families to explore various financial aid options.
  • You can find NORD’s educational resources here: https://rarediseases.org/patient-assistance-programs/

Partner Organizations and Additional Resources

• NORD Collaborations: NORD collaborates with various patient advocacy organizations and foundations that offer direct financial assistance to ALS patients.

  • Through the PARC and NORD’s website, you can find links to these partner organizations’ financial aid programs.
  • Examples of such organizations include The ALS Association, Team Gleason, and The Angel Fund (mentioned previously).

• Government Assistance Programs: NORD also provides information on government assistance programs that may benefit ALS patients, such as Medicaid and Medicare.

  • This information can be a valuable resource for patients with limited financial means.

Important Notes

• While NORD doesn’t directly provide financial assistance, it serves as a critical starting point for ALS patients seeking financial aid.
• By utilizing the PARC and exploring resources on NORD’s website, patients can connect with organizations offering direct financial support.
• NORD’s educational resources empower patients to navigate the complexities of healthcare financing and access government assistance programs as needed.