susan mast als resources
susan mast als resources
susan mast als resources

Susan Mast ALS Foundation staff works with ALS families to understand their emotions, needs and questions.

Once we learn your family’s needs, we will assist in connecting you with other ALS families or available resources who can help you.

FREQUENTLY ASKED QUESTIONS

What is ALS?

ALS (Amyotrophic lateral sclerosis) is a neurodegenerative disease that affects nerve cells in the brain and spinal cord. This disease causes muscle weakness, difficulty speaking and swallowing and usually results in total paralysis.

There are two different types of ALS, sporadic and familial. Sporadic is most common, approximately 90-95% of all ALS cases are sporadic. The other 5-10% is familial, which means inherited. At this time, there is no known cure. Most patients live with ALS 2-5 years.

In the United States, every 90 minutes someone is diagnosed with ALS and every 90 minutes someone dies from ALS.

Who is Susan Mast?

The Susan Mast ALS Foundation being created in loving memory of Susan Mast, who lost her battle with ALS on November 1, 2014. Susan was the Executive Director at Faith Hospice and her passion in life was to help others in time of need. The Mast Family is dedicated to keeping her memory alive so they created the foundation. Her memory lives on through the foundation.

What is the foundation’s mission?

The mission of the Susan Mast ALS Foundation is to provide excellent support to ALS patients, families and caregivers living in West Michigan. Our services focus on all areas of need for the regional ALS community, with special emphasis on respite care.

What are the foundation’s services?

The foundation’s services include respite care, loan closet, educational seminars, caregiver training, home visits, ALS connection, meals program, support groups and assistance to ALS clinics.

What is respite care?

Respite care provides the primary caregiver time away from their care duties. This break allows the caregiver to re-energize and promotes well-being for both the caregiver and person with ALS.

What is a loan closet?

The Susan Mast ALS Foundation offers a variety of new and used durable medical equipment for persons with ALS living in West Michigan.

If your physician, occupational or physical therapist suggests a piece of certain medical equipment that would assist you and your insurance does not cover the cost, our foundation may be able to assist.

What is caregiver training?

Helpers of Holland Home and the Susan Mast ALS Foundation have partnered to offer a monthly Caregiver Class to families who have a loved one with ALS. This 4 hour class teaches ALS caregivers and the family proper techniques to safely care for someone with ALS.

If you are an ALS family in West Michigan, you are welcome to bring up to 4 family members or friends to this 4 hour class free of charge. Caregiver training sessions are typically scheduled for Friday afternoons whenever demand requires.

What are home visits?

Staff at the Susan Mast ALS Foundation understand it may be difficult for a person living with ALS to visit our office. We will come to you.

We welcome the opportunity to meet you in the comfort and privacy of your home. During our visit, we will assist you with the support and coordination of services.

If you are wishing to have a home visit from someone who has walked a similar ALS journey, we can send a volunteer who can shed some light on the road you may be traveling.

What is ALS Connection?

Foundation staff works with ALS families to understand their emotions, needs and questions. Once we learn your family’s needs, we will assist in connecting you with other ALS families or available resources who can help you.

What are support groups?

Many of the staff at the Susan Mast ALS Foundation have experienced ALS firsthand. We are in this together and that’s why we host monthly support groups. It’s a time for us to come together in a relaxed environment to connect on a deeper level.

We are not a typical support group. There is not a lot of structure to the meetings. There is not a healthcare professional leading the meeting. We are just a group of people who understand ALS.

There is no need to explain your feelings. We get it. Come alone or bring your friends. Either way, just come. You will be glad you did.

What is your meALS program?

Staff at the foundation understands some weeks are harder than others. Sometimes a homemade meal delivered to your door helps during difficult times.

Where are West Michigan ALS Clinics?

The Susan Mast ALS Foundation works closely with the ALS clinics in West Michigan to provide support services and respite funding for caregivers of ALS patients.

Spectrum Neuroscience Center is located at 2750 East Beltline NE, Grand Rapids, MI 616-267-7104.

Mercy Health Hauenstein Neuroscience Center is located at 220 Cherry St SE, Grand Rapids, MI 49503 616-685-5050

Bronson Neuroscience Center is located at 601 John St. Kalamazoo, MI 49007 269-341-7500