Medical care costs from ALS can last a lifetime. Learn more about different ways to start a ALS fundraising campaign today.
Fundraise for ALS
Topics Discussed
Common ALS Expenses
- Home health care
- Activity-based therapy
- Specialized equipment
- Assistive technology
- Caregiving
An ALS diagnosis can bring lifelong physical, emotional, and financial challenges for individuals and families. From home health care and specialized equipment to assistive technology, therapy, medications, and caregiving support, the costs of living with ALS can add up quickly and often beyond what insurance will fully cover.
In this post, learn about common expenses families affected by ALS may face, what costs may not be covered by insurance, and how to find financial support through an ALS fundraising campaign.
What Are the Common Costs to Families Affected by ALS?
Not only is ALS’s impact on quality of life considerable, but the financial impact can also be extensive. Costs will vary depending on treatment. According to one study, it can cost between $150,000 and $200,000 each year to treat a single person who is living with ALS. Health insurance will cover some medical expenses for people who have been diagnosed with ALS.
An ALS diagnosis can turn life upside-down for an individual, their family, and their entire community. On top of the physical and emotional challenges of this diagnosis, ALS often comes with a wide range of sudden expenses that are critical to maintaining care, mobility, access, and wellbeing.
Insurance often doesn’t cover all the costs associated with living well with ALS. In this post, learn which expenses an ALS patient may face, which costs may not be fully covered by insurance, and how to get help from your community through an ALS fundraising campaign.
Common ALS Costs
There are treatment choices for those who have been diagnosed with ALS. However, if your insurance is not willing to cover all the costs associated with treating ALS, the expenses add up rapidly. That is where Help Hope Live can provide ALS assistance. Common out-of-pocket expenses for families living with ALS include:
- Health insurance premiums, deductibles, and co-payments
- Medications
- Travel expenses for rehabilitation and treatment
- Relocation or moving expenses related to the diagnosis (such as in the case of moving to be closer to a rehabilitation center or hospital for treatment)
- Temporary housing due to relocation
- Mileage, tolls, and parking fees for visits to rehabilitation center or hospital
- Specialized wheelchairs and other durable medical equipment
- Specially equipped vans and durable medical equipment
- Home modification related to the diagnosis
- Home health care services
- Assistive technology
- Physical therapy and vocational rehabilitation
- Experimental treatments
What Are the Treatment Options if You or Someone You Know Is Diagnosed with ALS?
Treatment options vary from occupational therapies such as movement training and exercises to pharmaceutical treatments. There are several medications available, and new drugs are in development all the time.
According to Johns Hopkins Medicine, treatments include:
- Medications to relieve painful muscle cramps, excessive salivation, and other symptoms
- Heat or whirlpool therapy to relieve muscle cramping
- Exercise, recommended in moderation, to potentially help maintain muscle strength and function, as well as physical therapy to maintain mobility and ease the discomfort of muscle stiffness, cramps, and fluid retention
- Nutritional counseling to promote nutrition and offer other dietary options when swallowing becomes difficult
- Speech therapy and communication training to maintain as many verbal communication skills as possible. Communication training also includes non-verbal techniques
- Devices such as splints, corrective braces, grab bars, and reach-extenders to help with daily activities such as dressing, eating, using the toilet, and bathing
- Special equipment such as wheelchairs, electric beds, or mattresses to maximize functional independence
Securing Financial Assistance for ALS Support Services
Establishing greater support for ALS patients is part of our nonprofit’s mission. Through community-based fundraising, Help Hope Live is dedicated to helping those in need to raise funds for medical treatment and related costs associated with an ALS diagnosis.
How Does ALS Support Services Fundraising Work?
The fundraising process with our nonprofit starts with a few simple steps:
- Complete a short campaign request at helphopelive.org/get-started/apply
- We will contact you if community-based fundraising is a possible option
- You’ll be paired with a Client Services Coordinator
- Your Coordinator will provide you with one-on-one fundraising help, including personalized materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and much more
How Is Help Hope Live Different from GoFundMe?
Help Hope Live differs from GoFundMe by:
- Verifying your medical need for complete donor confidence
- Enabling tax-deductible donations
- Providing one-on-one fundraising help
- Managing all funds raised to protect your state-based benefits (funds raised are not considered personal income/assets to you)
We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.
Does Community-Based Fundraising Work?
“This wheelchair accessible vehicle will provide her with the ability to get out, enjoy life, and maintain the positivity necessary to face her life with ALS.”
Marlena Crispell was diagnosed with ALS in 2021. While holding out hope for long-term treatment pathways, Marlena and her husband are fundraising with Help Hope Live for the ALS-related expenses insurance will not cover, including an accessible vehicle and home modifications to provide access to her bedroom and bathroom. They are more than halfway to their initial fundraising goal of $40,000.
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"Recently Kristy received her white wheelchair and has named it the Roadrunner!"
Kristina “Kristy” Cosden lost most of her mobility and began using a wheelchair within just six months of being diagnosed with ALS. A fundraising campaign in her honor with Help Hope Live raised over $10,900 in just two weeks.
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