My name is Margit Olson. I was diagnosed in April of 2025. Since my diagnosis, I had to retire from being a high school teacher. I live in South Philly with my wife and our 11-year-old son. ALS has stolen my independence, my voice, and my career. But it will never steal my compassion. Since I retired, I spend my time volunteering with local organizations to provide food for those in need. I work with the South Philly Community Fridge and Lasagna Love. As we say in our house, food is a right, not a privilege.

My name is Ryan Pogemiller. My first conversation with ALS began in 2015, when I found out that my father had been diagnosed with the disease. Later, in 2016, he passed away due to the disease. At the age of 15, I realized the mortality of life and the need to find a cure for the disease that took my father.

Disability Awareness Month: What It Means for Families Living With ALS

September is Disability Awareness Month, a time to recognize the experiences of people living with disabilities and think about how we can make our communities more understanding, welcoming, and accessible.

For people living with ALS, disability can change almost every part of daily life. ALS gradually takes away a person’s ability to move, speak, eat, and breathe. But it does not take away who that person is. They still have thoughts, feelings, dreams, a sense of humor, and a desire to be included in the world around them.

My husband, Pete, lived with ALS for nearly 11 years. During that time, I saw how much strength it took for him to adjust as his abilities changed. I also learned that some of the hardest challenges were not caused by ALS itself. They came from buildings that were not wheelchair accessible, a lack of transportation, expensive medical equipment, necessary home modifications, and too little support for family caregivers.

Disability awareness is about more than knowing that disabilities exist. It means taking the time to understand what everyday life can look like for someone with a disability.

Can a person using a wheelchair enter the building? Is there an accessible restroom? Can someone who has difficulty speaking communicate in a way that works for them? Are caregivers included and supported? Can a family affected by ALS attend an event, enjoy a meal out, or take a vacation without facing one barrier after another?

These may seem like small things to some people, but they can make the difference between someone being included or being left out.

It is also important to remember that not every disability can be seen. Someone may look fine while dealing with weakness, exhaustion, breathing problems, or difficulty communicating. Sometimes the most helpful thing we can do is slow down, listen, and ask what the person needs instead of making assumptions.

At Let Hope Grow, Inc., we want people living with ALS and their families to know they are not alone. We help with medical equipment, home modifications, financial needs, and other resources that can make daily life safer and a little easier. We also support caregivers, encourage greater accessibility, and help fund research in the hope of finding better treatments and, one day, a cure.

This month, I encourage everyone to take one meaningful step. Learn more about ALS. Look around your workplace, business, church, or community event and ask whether it is truly accessible. Be patient with someone who communicates differently. Check in on a caregiver. Support organizations that work directly with people living with disabilities and their families.

Disability does not lessen a person’s value or their need for friendship, laughter, purpose, and joy. Every person deserves to be seen, heard, respected, and included.

At Let Hope Grow, we believe that even during life’s hardest moments,
hope can continue to grow.

 

 

The Invisible Weight of Caregiving

People often call caregivers heroes, but the truth is that most of us don't feel heroic. We feel tired. We feel overwhelmed. We feel stretched thin between doctor's appointments, medications, bills, household responsibilities, children, work, and trying to hold ourselves together while watching someone we love fight a battle we wish we could fight for them.

People see the smiles in photos, but they don't see the sleepless nights, the canceled plans, the loneliness, or the tears shed in private. They don't see the anxiety that comes with wondering what tomorrow will bring or the guilt that comes from feeling exhausted while still loving deeply.

Caregiving can be beautiful and heartbreaking at the same time.

Many caregivers struggle silently because they feel they have to be strong all the time. But strength doesn't mean pretending everything is okay. Strength is asking for help. Strength is admitting you're tired. Strength is taking a break when you need one. Strength is recognizing that you matter too.

Caregivers need support, not judgment. They need understanding, not criticism. They need people who check in, offer help, bring a meal, sit with their loved one for an hour, or simply say, "How are you doing?"

Because caregivers are human too.

If you know a caregiver, remember that they are carrying a weight most people will never fully understand. A kind word, a helping hand, or a simple acknowledgment can mean more than you realize.

And to the caregivers reading this:

You are doing enough.

You are making a difference.

You are loved.

And even on the days when you feel unseen, the love you give matters more than you know.

Caregiving may not always be recognized, but the compassion, sacrifices, and strength behind it leave a lasting impact that no one can measure.

Take care of yourself, too. You deserve care, compassion, and grace just as much as the person you are caring for.

Raising Children While Caregiving: Living Between Two Worlds

Some days, it feels like I'm living in two worlds. One moment I'm helping with homework, making dinner, and attending ball games. The next, I'm managing medications, medical equipment, and doctor's appointments.

Children see more than we realize. They witness strength, compassion, and sacrifice. They also experience fear, confusion, and disappointment when life doesn't look like everyone else's.

There is no perfect way to navigate raising children while caregiving. There are only moments—moments of laughter, tears, frustration, and love.

Our children may not remember every hardship, but they will remember how deeply they were loved and how our family stood together through life's storms.

Sometimes surviving the day is enough. And sometimes, that's a victory worth celebrating.

2025 Brings a Shift in How ALS Is Treated And Understood

For decades, ALS has been addressed like a puzzle without a map. Most medications were designed to slow the progression of ALS, as opposed to stop the disease. However, this is changing with recent advances in gene therapy for ALS.

Researchers have begun to focus on specific gene mutations like SOD1 and UNC13A that cause specific types of ALS. New therapies, like antisense oligonucleotides (ASOs), are being developed to target mutations directly through therapies that aim to disrupt the disease process, and not just alleviate symptoms. Some have even advanced to late stage clinical trials, which gives families something more concrete than hope: data.

You can find more about ASOs and their progress via trusted medical sites such as The ALS Association, and Springer’s review of SOD1 gene targeting.

What this translates to is simple, yet seismic. ALS treatment isn’t solely one-size-fits-all anymore. We are beginning to see an emergence of personal, tailored, and predictive treatments for ALS.

Inside The Science: Gene Therapies, Biomarkers, and What’s Next

Gene therapy isn’t the only wave rolling in.

Researchers are also investigating ways to stop the toxic proteins like TDP-43 (one of the more common pathological hallmarks of ALS) from building up in motor neurons. There are promising treatments called intrabodies that are being developed which follow this principle to eliminate the toxic features and slow progression.

Some scientists are working with something called PIKFYVE inhibition, yes it’s a mouthful, but it’s a target that had strong results in preclinical models. And for the first time, doctors are using biomarkers like neurofilament light chain levels better diagnosis and track ALS progression earlier than ever before. This could be a game changer for families as they begin to make care decisions.

While all of this may sound technical, the implications are very intimate. If you’re a caregiver, it means your loved one could qualify for a trial that fits their body’s unique response to ALS. If you’re living with the disease, it means doctors might soon have better answers to questions like:

How long will I walk?

How long will I talk?

When do I need to prepare?

And maybe, someday: What if I didn’t have to lose those things at all?

For more about the future of diagnostics and predictive models, read this open-access review.

What This Means for Families (And Why Let Hope Grow Is Still Here)

Science does not change everything. Not immediately.

You are still taking care of someone who needs assistance with getting dressed. You are still telling your child why Grandpa can’t speak the same way anymore. You are still figuring out the budget for ramps, wheelchairs, and time off from work. And no trial, nor molecule, nor research paper, will ease that.

But you are not carrying that alone. Let Hope Grow is still here. For support. For help when the bills are piling up. For connection when the silence is too loud.

While researchers are moving forward, we keep holding the line. Until one day, the two will converge…the science that stops ALS, and the community that never gave up waiting for it.

Explore our support programs here. Or, if you feel inspired, donate now to help us continue to be that bridge.

A Gentle Push Toward Tomorrow

We are not there yet, but 2025 has given us hope that we may be getting closer.

With every new trial, every new discovery in gene therapy, every family willing to say yes to experimental treatment, something shifts. And in that space between research and reality, we will continue to plant seeds.

Because healing may start in the lab, but it grows in the lives of people who don’t give up.

Let Hope Grow is more than a name. It’s a promise.

And we intend to keep it.

I went to the Voices of Hope concert because it supported ALS families. I figured it’d be a nice night out, maybe hear some music, check out the vendors. I didn’t expect it to stick with me like it did.

Then Frankie Torres stepped out, and the tone shifted. She introduced herself, shared that her dad passed away from ALS, and talked about writing “Losing to the Letters” with Mikey Stone, who’s still living with the disease. You could hear it in her voice before she even hit the first note, this wasn’t just another song to fill the setlist. It mattered. That moment didn’t need any buildup. You just had to be there. I looked around and saw people wiping their faces without even trying to hide it. You could feel the weight of it; personal, quiet, and shared by everyone at once.

Then Jimmy Charles came on with his full band, and it was like the entire field exhaled at once. The energy shifted again, this time to joy. He cracked jokes, moved around the stage like he owned it, and had people dancing in the grass before the first chorus even hit. But it didn’t feel like a concert trying to hype you up. It felt like a celebration. He talked about ALS. He talked about why he was there. And you could tell he actually meant it.

Everything Was Intentional

Let Hope Grow didn’t miss a beat. Everything felt thought out but not overdone. The signs, the layout, the flow, it all just worked. You didn’t have to wonder where to go or what to do. It felt natural to move from the raffle tables to the food tents to the kids’ zone to the stage without thinking twice.

The raffle and silent auction tables were packed. Not just with filler items, but with things people actually got excited about. My husband ended up with a signed wrestling boot from Ric Flair (yes, that Ric Flair), which we’re giving to his dad for Christmas. I won a sweets basket from Bird-in-Hand Family Inn, and I’ve already accepted that I’m not sharing it. The excitement over those wins made the night feel even more connected; strangers celebrating with each other, joking in line, comparing ticket numbers. It felt like a room full of neighbors.

There wasn’t a “look at us” vibe. It was more like “we’re in this with you.”

ALS Needs More Attention

Most people don’t think about ALS unless it hits their family. That’s just how it goes. But Let Hope Grow is changing that. They don’t lead with fear. They lead with help. Real tools. Real people. Real support.

This was their first large-scale event, and they absolutely pulled it off. If they do it again next year, I’ll be there.

If you want to support them, it doesn’t take much. Donate if you can. Share their story. Follow what they’re doing. It matters.

Start here: lethopegrow.org

What I’ll Remember

It wasn’t just the sunset. It wasn’t just the soup or the music or the raffle wins.

It was the mom explaining ALS to her kid. The quiet moment between a caregiver and the man she wheeled across the field. The way people leaned in during the songs that hurt a little. And the way they danced anyway.

I’m glad I went. I’ll remember it for a long time.

The VA has paid $161,324.43 and thanks to Pete’s veteran status, none of the remaining cost will come out of pocket. But what happens when someone doesn’t have VA support? What happens when insurance doesn’t catch everything? These are the questions that keep Lura up at night, not just for Pete, but for every family she advocates for.

ALS doesn’t come with a warning. It doesn’t give families time to financially prepare for months long hospitalizations or the specialized care that follows. And yet that’s what so many families are forced to navigate. The receipts pile up while families do their best to stay focused, keep moving, and find a way forward.

Hidden Expenses of ALS After Hospital Discharge

Beyond the hospital walls, there are costs that rarely make it onto spreadsheets but carry just as much weight. Home modifications. Medical equipment rentals. Feeding tubes and supplies. Medication copays. Mobility devices. In home care support. The cost of missed work. The gas it takes to drive to and from appointments five days a week. The meal delivery services when cooking is no longer possible. The emotional energy spent trying to make everything look manageable.

Let Hope Grow works directly with families experiencing these realities. The mission has always been about lifting the weight where possible. Offering help when help feels out of reach. And telling the truth about what ALS takes, not just physically, but financially, emotionally, logistically.

ALS Medical Debt: One Family’s Reality

Lura and Pete’s story is personal, but not unique. It reflects what so many families go through once the diagnosis sets in and the system begins to reveal its gaps. Their TikToks during and after the hospital stay tell the story in real time: moments of confusion, strength, exhaustion, and quiet clarity.

The fact that Lura had access to the VA and insurance made a difference. But even with that, she was left asking questions that no one could answer right away. Questions like, who will cover this? What can be skipped? What happens if we can’t pay? And how do families without coverage begin to survive this?

This is where the mission of Let Hope Grow becomes even more urgent. The nonprofit was never created to help cover Pete’s expenses. Every dollar raised is used to support other families who don’t have the safety nets Pete was lucky to have. Seeing these numbers hasn’t shaken Lura’s mission. It has only deepened her drive to work harder. To bring more help to more people. To make sure others don’t face this kind of weight without support.

The Financial Toll of ALS and Why It Must Be Named

There are people right now trying to decide between new brakes on the van or a hospital bed rental. Between taking on extra work or staying home full time to meet caregiving needs. Between asking for help and trying to carry it all without anyone noticing.

Talking about money might feel uncomfortable. But staying silent helps no one. The bills are real. The strain is real. And acknowledging that is the first step toward changing it.

You can help. Share this story, donate here. And you can learn more about what Let Hope Grow does to support families living with ALS by visiting lethopegrow.org.

This story is about truth. It’s about bringing attention to what families are facing behind the scenes. And that awareness deserves to become action.

Because the invoices are still coming. And so are the families who need someone to stand beside them.

Let Hope Grow is ready.

Not all hotel beds are truly accessible. Platform beds make safe transfers nearly impossible for many people living with ALS.

For those of us in the ALS community, these small details become defining moments. A door that doesn’t open automatically. A ramp that angles too steep. A public restroom with a grab bar placed just out of reach. These aren’t just annoyances. They can mean the difference between going out or staying home. Between independence and isolation.

A huge example often shows up in hotel rooms. Because not everyone who needs an accessible room uses a walker or a lightweight transport wheelchair. Sometimes, the person needs a full lift or a second person to help them safely transfer into a bed or another chair. And a platform bed, while trendy, can completely block that process. The room might meet ADA guidelines, but still fail the real life test of accessibility.

What Disability Pride Really Means This Month

Disability Pride Month is about visibility, truth, and naming the obstacles that shouldn’t be there anymore.

It began in July 1990, the same month the Americans with Disabilities Act (ADA) was signed into law. Disability Pride Month was created to celebrate the strength and diversity of people with disabilities, while also acknowledging the ongoing fight for access and equality. It exists because legal change doesn’t always mean lived change. This month is a reminder that people with disabilities are not defined by their diagnoses or limited by their capabilities. The barriers they face are more often built by a world that still doesn’t fully include them. The ones that make daily life harder than it has to be. And the ones that remind us why Let Hope Grow exists.

Our mission is to stand beside the people living with ALS and help create a world that doesn’t make it harder. That includes advocating for real access. Practical support. Honest conversations about what needs to change. Because what good is awareness if it doesn’t lead to action?

When those spaces are taken by someone who doesn’t need the additional room, it forces hard choices. Waiting. Turning around. Skipping the trip entirely. Just like a too high bed or a narrow doorway, an unavailable parking spot can make the day feel heavier than it already is. Every piece of the environment matters. Not just for comfort, but for inclusion.

You can support our work by learning more at lethopegrow.org, or by donating directly here. You can also follow us on Instagram and TikTok, where these stories are told in real time, by the people living them.

This month, we honor the truth. Disability pride is not about pretending everything is fine. It is about honoring how hard people fight to live with dignity, despite all the ways the world still resists making space for them.

Let Hope Grow will never stop fighting for that space. Not just during Disability Pride Month, but every single day someone needs it.