What to Expect if You or a Loved One Has Been Diagnosed with ALS

Amyotrophic lateral sclerosis (ALS,) also known as Lou Gehrig’s disease, is a condition that affects the nervous system. Specifically, it targets muscles people move at will, such as muscles in the arms and legs. ALS is a progressive disease; symptoms increase in severity over time. Eventually, people with ALS gradually lose muscle strength and experience limited movement and less freedom to live their lives independently.

Ultimately, ALS will affect breathing muscles and other basic reflex muscles, including the muscles required to power the eating reflex. According to ALS Pathways, ALS takes significant physical, psychological, and emotional tolls on patients, their families, and caregivers.


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


Finding Financial Assistance for ALS

Maintaining health and quality of life can become a staggering financial (and emotional) burden for an entire household when a member is diagnosed with ALS. The good news is that support is available. Fundraising can provide hope for patients and their families in need of financial help while living with ALS.


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.


Turn to Help Hope Live for Support for ALS Patients

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


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:

  1. Complete a short campaign request at helphopelive.org/get-started/apply
  2. We will contact you if community-based fundraising is a possible option
  3. You’ll be paired with a Client Services Coordinator
  4. 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 donations that are tax-deductible
  • 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)
  • Paying bills directly, allowing you to focus on treatment and recovery

We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.


Does Community-Based Fundraising Work?

Here are a few Help Hope Live ALS fundraiser success stories:


“Help Hope Live is the only thing that has brought hope back into our lives in the midst of this loss and devastation.”

Viviane MacDonald is a mother of two young boys who was diagnosed with ALS in 2018. In 2022, as part of our suite of personalized fundraising resources, Help Hope Live provided personalized press outreach support to help Viviane and her husband amplify their story to secure critical financial assistance and improve Viviane’s quality of life.

The community came forward immediately to cover the MacDonalds in support. Viviane’s campaign raised $18,000 within one week after her story was shared in local news outlets. By the end of January 2022, they had surpassed their initial $50,000 fundraising goal.

In addition to financial support, press coverage enabled Viviane’s family to connect with local sources for used equipment to further relieve their financial burden and upgrade Viviane’s mobility and independence.

“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.

MOST COMMON ALS EXPENSES

Medication
Health insurance premiums
Caregiver costs
Assistive technology

RESOURCES

Ready to Get Started?

If you choose to fundraise with our nonprofit, here’s how the process will look:

1. APPLY for assistance

2. YOU’LL BE PAIRED with a Client Services Coordinator

3. YOUR COORDINATOR will provide you with one-on-one fundraising help, including personalized fundraising 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 more.


Need Other Financial Help Options?

For alternatives to fundraising, you can find information on a variety of other financial assistance options. Please view our Catastrophic Illness Resource Directory for insight into sources of direct financial aid, support groups, and other resources for ALS patients and their families.