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You Do Not Have to Face ALS Alone.

An ALS diagnosis changes life quickly for individuals, caregivers, and entire families. Questions pile up. Emotions feel overwhelming. Daily needs become harder to manage. Touched By ALS exists to help families across Upstate South Carolina find support, resources, encouragement, and community through every stage of the ALS journey. Whether you are newly diagnosed, caring for a loved one, or simply unsure where to begin, we are here to help you take the next step.

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How We Help

Touched By ALS works to fill the gaps families often face outside of the hospital system by providing support for practical, emotional, physical, and spiritual needs. Every family’s journey is different, and we do our best to connect families with the support that fits their unique situation.

We currently serve the counties shown in the map. If you live outside this area, please contact us anyway. We will do our best to connect you with trusted resources.

Support may include:

Financial assistance for qualifying families

Help navigating local ALS resources

Caregiver support and encouragement

Community connection and volunteer assistance

Equipment and accessibility guidance

Family sponsorship programs

Emotional and spiritual support

Connections to trusted healthcare and community partners

Request Support

Need Help? Start Here.

If you or someone you love is living with ALS and needs support, we encourage you to reach out. Our process is designed to be simple, compassionate, and centered around your needs.

Step 1: Complete the Request Form
Share basic information about your situation, current challenges, and the type of support you may need.

Step 2: We Review Your Request
Our team reviews each submission carefully and confidentially to better understand how we may be able to help.

Step 3: We Follow Up
A member of our team will contact you with the next steps, available resources, or additional information.

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Eligibility & How It Works

Who Can Request Support?

Support availability may depend on:

Touched By ALS primarily serves individuals and families affected by ALS throughout Upstate South Carolina. Because needs can vary greatly, every request is reviewed individually with compassion and care. If you are unsure whether you qualify, we still encourage you to contact us.

Current funding and program availability

Location within our service area

Type of assistance requested

Individual family circumstances and needs

Important to Know:

Applying does not guarantee financial assistance

Some programs may have waitlists or limited availability

All information shared is handled respectfully and confidentially

We may connect families with additional organizations and community resources when appropriate

Resources for Families

ALS Support Resources

Families facing ALS often need support from many different places. Below are trusted organizations and resources that may help with medical care, education, equipment, advocacy, caregiving, and financial guidance.

Caregiver Self-Help

Caregiver Stress: Tips for taking care of yourself

Taking Care of YOU: Self-Care for Family Caregivers

Caregiver Burnout

Family Caregiver Support

Caregiver Resources

SC Respite Programs

Support and Education

Helping Children Cope

5 Ways to Help Kids Cope with a Parent’s ALS

Talking with and Supporting Children and Youth

Conversations with Children

Building Resilience in Children Through Coping Skills

Newly Diagnosed

Just Diagnosed with ALS? We Are with You

Newly Diagnosed with ALS

Newly Diagnosed Guide for ALS

ALS News

ALS News Today

ALS Association

ALS Association – South Carolina Chapter

ALS Education

Amyotrophic Lateral Sclerosis (ALS)

ALS Clinical Trials

ALS Assistance

Appalachian Council of Government Family Respite Care Grant: Services for family caregivers and help with transportation
for Greenville, Spartanburg, and Anderson Counties

Upper Savannah Area Agency on Aging Family Caregiver Program: Financial and transportation assistance for Laurens County

Inquire about a one-time grant and other assistance at SC ALS Association

Frequently Asked Questions

What is ALS?

Amyotrophic Lateral Sclerosis (ALS) is a neurological (nervous system) disease that belongs to a group of disorders known as motor neuron diseases. It’s a progressive disease that attacks nerve cells that control the muscles. When these cells die, voluntary muscle control and movement are lost. This leads to progressive weakness and disability. In most cases, the mind remains sharp. For more information, read “What is ALS?” by Suzy Hobbs, FNP, Prisma Health.

Where have I heard of ALS?

Older folks remember the legendary baseball player Lou Gehrig, who contracted ALS. It’s sometimes even called Lou Gehrig’s. Others will remember the Ice Bucket Challenge, which raised millions for research. Folks were dumping icy water on their heads in fund-raising videos. Those funds never trickled down to the clinics, for patient care, but stayed, instead, at the research level.

What is the cure for ALS?

It hurts us a lot to say there is no cure at this time. There are some drugs which help manage the symptoms. Your local ALS clinic is always on top of the latest developments in research and trials.

Who typically gets ALS?

It’s a weird disease. There is no typical patient. The Greenville Clinic has patients in their 20s, 30s, 40s, 50s … all the way up to the 80s. Researchers are still trying to figure out if environment plays a role.

Is there more than one kind of ALS?

There are two kinds: one that affects your limbs in the early stages, (lumbar) and one that affects your throat and speech (bulbar).

Is ALS contagious? Is it hereditary?

It’s definitely NOT contagious. A tiny percentage of patients carry a gene for hereditary ALS. For most patients, however, it’s completely random.

What do ALS patients need most?

Love, support, and faith. And remember: the mind is not affected by ALS, nor is the hearing! Treat ALS patients like you did before the diagnosis. Watch to see what may be causing the struggle and offer a solution, or help them feel less self-conscious about it. No one likes to struggle, and not everyone likes to ask for help. Hopefully, your friend or family member can be open with you or someone about their needs, but anticipating those needs is always a good idea.

What can patients and their immediate family expect?

It’s normal to be shocked, depressed, angry, or all three at diagnosis and even beyond. It’s said that grief has five stages, and if your family has been touched by ALS, you will go through them all. You are, after all, grieving the sudden loss of your life as it has been until now. The main thing to expect is a lot of change. Sometimes it comes quickly, sometimes it doesn’t. But it’s not uncommon to solve one problem only to have it replaced by another. So everyone needs to keep taking deep breaths and work together. This is not a sprint, it’s a relay. Hand off the baton.

Why is this happening to me or someone I care about?

None of us knows what will happen in our lives. We are often left confounded by what lies before us, asking “why me?” or “why now?” These are normal feelings. An ALS diagnosis is a challenging gauntlet to navigate. Lean into your friends, family and church, or decide to make a difference by being the person your ALS connection can lean into. We all play a vital role.

What is an important project I can focus on, one that has a positive long-term effect for my family?

Identify or collect passwords and keys for everything owned by the patient: phone lock code, computer login, safe deposit box key, Facebook password, Google password, safe codes, keys to storage sheds, cars, etc. Don’t forget logins to airlines, timeshares, websites like eBay or ancestry.com, credit cards, utilities, and streaming accounts. This would be a great time to set up a password keeper (app) or put everything into the cloud, or on paper and into a safe. No one is saying the passwords must be shared now… but do start collecting them, as speech and writing will become more difficult for the patient. Hey, we ALL need to do this… you’ll just be getting a jump on an important family project.

What about preserving stories and historical facts?

This is another thing that we all need to do, and a serious diagnosis can spur us to do it: some lemonade from lemons. Start recording the special memories or family history your friend or family member with ALS is aware of. Ask them questions and find a way to record what they say about Great Grandpa or where they grew up or why, exactly, they started collecting arrowheads or taking those annual trips to Newfoundland. Use video, type it in Word, or just write it down the old-fashioned way. You’ll never be sorry you took time for these conversations, and each one will bring up other questions. You’ll wind up with a whole new appreciation of family history and realize the wealth of stories you have to share, too. If you’re a friend of someone Touched By ALS, recording these stories would be a wonderful gift.

ALS Tips

Contact the Prisma Health ALS Clinic.

When comfortable, inform friends, family, and coworkers. There is no “easy” way to have this conversation. ALS sucks, so this will look different for everyone.

Assemble a small support team.

Lean into your spirituality.

Become an ADVOCATE for yourself! Ask questions and accept that many may not have answers.

Do something special for you.

Create a log of important passwords and dates.

Review your insurance(s).

Consider Advanced Care Planning: Form/Update Will, Durable Power of Attorney, and Health Care Power of Attorney.

If you own Real Property (house) and/or a vehicle, confirm the Deed and title are in your name and, if married, include your name. If not, we would encourage you to refile for some form of joint ownership to potentially qualify for tax exemptions in the future. (If or when you become non-ambulatory).

Start journaling or blogging.

Evaluate your home’s accessibility.

Consider transportation options.

Simplify your finances.

Determine if you qualify for available financial programs, grants, or other offerings.

Consider changing account ownership to include your spouse, Power of Attorney, or Custodian.

Update Plans and Documents that have Beneficiaries.

Create a calendar of routine maintenance items in your house, automobile, etc.

Consider purchasing a rubber stamp of your signature.

When your medical team determines you are non-ambulatory, research The Protection and Advocacy System for South Carolina (disabilityrightssc.org) for tax and special benefits for people with disabilities in South Carolina.

Consider getting help at home before you really need it, so everyone has time to adjust.

Life is still happening, and there is beauty in living each day. Don’t let the little things get in your way of living and loving.

When you’re comfortable, don’t be afraid to have direct conversations with loved ones about what life will be like without you.

Keep the faith!

Be very wary of the internet.

Do not change how you interact with your friend or family member. They are the same person they have always been, unchanged.

Never be afraid to discuss hard things.

Continue to be present; don’t forget to laugh and enjoy living with your friend or family member.

Life is still happening, and there is beauty in living each day. Don’t let the little things get in your way of living and loving.

If you see that a yard needs mowing, groceries need to be picked up, etc. Just do it!

Reach out for help if you are feeling sad or overwhelmed.

Consider attending a support group.

Help educate patients and family members about available resources.

Keep the faith!

Be very wary of the internet.

No two patients are alike; ALS has no commonality.

To be the best you, you must take care of yourself.

ALS is the burden, not the patient.

It is normal to feel tired and overwhelmed.

Never be afraid to ask for help; people inherently want to help but don’t know what to do, so ASK!

Consider reading uplifting, educational books.

Consider attending a support group.

You Are Not Alone

Every ALS journey is different, but no family should have to walk through it without support, compassion, and community. Touched By ALS is here to help families find hope, connection, and practical support when they need it most.

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