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Medical care costs from ALS can last a lifetime. Learn more about different ways to start a ALS fundraising campaign today.
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.
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:
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.
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.
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:
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.
The fundraising process with our nonprofit starts with a few simple steps:
Help Hope Live differs from GoFundMe by:
We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.
Here are a few Help Hope Live ALS fundraiser success stories:
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.
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.
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.