Project ALS

Today is International Biotechnology Day 🧪

Every advancement in ALS research begins with people willing to ask difficult questions, challenge assumptions, and explore new possibilities. From studying disease biology to developing potential therapies, we appreciate it all and understand how this work leads to meaningful progress.

Today, we celebrate the researchers and innovators working to build a future with better treatments and more hope for people living with ALS.

The Project ALS community has been part of the prosetin journey from the very beginning. Now, we're excited to share what's next.

Join us on Tuesday, June 16 at 5:00 PM ET for a virtual webinar focused on prosetin, the first-ever potential ALS therapy developed through the Project ALS Therapeutics Core. Co-hosts Valerie Estess and Erin Fleming will be joined by prosetin co-inventor Emily Lowry, PhD, clinical advisor Jinsy Andrews, MD, MSc, and community advisor Gwen Petersen for a candid prosetin development update and Q&A.

Register today: https://bit.ly/4oq2mbn

This story was shared by Carl Ragsdale, who lost his wife to ALS.

– ♥️

My wife, Alicia, and I were married for 61 years.

The first time I saw her was on a boat dock. And being the extremely cool, suave guy that I was, I pushed her into the water. After that weekend, we stayed in touch through letters while I was stationed in Korea for 15 months. I proposed by mail, and she accepted the same way.

Together, we built a beautiful life. We had three daughters, seven grandchildren, and a home full of creativity, faith, and family traditions. Alicia was talented in ways that always amazed me. She made clothes by hand and even made our daughters’ wedding dresses.

The first sign that something was wrong was her voice becoming hoarse. At first, we thought it might be related to a family history of esophageal issues. Then, during a trip to Turkey, we noticed a slight limp. Eventually, our family physician referred us to a neurologist, and we went to Duke University, where Alicia was diagnosed with ALS.

As the disease progressed, we moved to an independent living community so I could better manage her care. Through all of it, Alicia remained incredibly positive. Less than a year before she passed away, there’s a photo of her wearing a party hat with a huge smile on her face. That was simply who she was.

Even now, years later, people still tell me what a wonderful, upbeat spirit she had.

One of the things I remember most is how carefully she saved every drawing, card, and school project our grandchildren gave her. In the later stages of her illness, the grandchildren would visit one by one, and she would sit with them, going through those memories together. They would laugh a little and cry a little.

I hope research will someday uncover both the cause of ALS and a cure. Meaningful progress is urgently needed for families facing ALS.

Alicia had a remarkable ability to encourage the people around her, even near the end of her life. She was a pretty unique person.

Join us on Tuesday, June 16, at 5 PM ET for a special webinar where we'll discuss prosetin, the first-ever potential ALS therapy developed through the Project ALS Therapeutics Core. Dive into an update on early clinical data from the fully enrolled Phase 1 study, new information supporting the role of MAP4K in ALS, and your questions answered live.

Hear directly from prosetin co-inventor Emily Lowry, PhD, clinical advisor Jinsy Andrews, MD, MSc, community advisor Gwen Petersen, and Project ALS co-hosts Valerie Estess and Erin Fleming.

Register Now: https://bit.ly/4vJG72B

On World Brain Tumor Day, we recognize everyone affected by brain tumors and honor the researchers, clinicians, caregivers, and advocates working tirelessly to advance treatment and care.

At Project ALS, we believe every step forward in neuroscience research brings us closer to understanding the complex diseases that impact the brain and nervous system. Today, we stand in support of all those affected and all those searching for answers. 💜

ALS research is often discussed through scientific papers, clinical trials, and highly technical language. But before any discovery is made, before any experiment is run, and before any treatment is developed, there is a question waiting to be answered.

If you could ask one ALS research question, what would it be and why? Let us know in the comments.💡🔬

Advice from a former caregiver, this individual would like to remain anonymous~

I am someone’s adult child, and was the caregiver of someone who passed from ALS. Getting that diagnosis is overwhelming. For those of us that have been through this, we all want the world to stay how it is, life pre-diagnosis. There’s this feeling of unknowing that comes with the diagnosis as well, because we honestly don’t know exactly what we need, but I have an idea of a few things:

Earlier access to information on all services and devices available, so someone like me who is caregiving can get comfortable with them.

Do not send us to medical professionals who are unfamiliar with ALS; one of the physical therapists insisted my pALS continue standing when they wanted to stop, and they never stood again. Medical needs and physical therapy needs may be the opposite of what is generally needed.

And lastly, please respect that we are still a family that may want privacy. Please keep that in mind and consolidate visits so the family can still have time together, rather than meeting with someone multiple times.

Today is Lou Gehrig Day ⚾♥️

Today, we honor Lou Gehrig's legacy and recognize the researchers, caregivers, and individuals living with ALS who continue to push progress forward in different ways every day.

My name is Mindy Spencer, and I would like to talk briefly about my dad, Darrell Dugan.

He was a father of five, a grandfather, a brother, an uncle, and a supporter of everyone he loved. He was an active fundraiser for the Cystic Fibrosis Foundation in support of my niece, a former CASA advocate, and a volunteer tax preparer who always fought for what was right.

He loved to travel and hike with my mom, Mary, to whom he was married for 49 years. They had just bought a condo in Cape Coral, Florida, where they hoped to spend their retirement winters.

My family visited them in the summer of 2018. Around that time, he was beginning to experience mobility issues and was working with doctors to find answers. He was diagnosed with ALS in September 2018.

ALS is such a cruel disease. It stole his body quickly, but his mind remained brilliant. He had the quickest sense of humor, and watching ALS take that away was heartbreaking.

His disease progressed faster than we could keep up with. Reliable information was hard to find, so much of what we learned came from online communities and other patients. Thankfully, my dad was determined to learn everything he could. He educated himself about ALS care, advocacy, and the challenges patients face in emergency settings, helping our family navigate difficult decisions along the way.

In January 2019, he and my mom moved from Lafayette to Mahomet, Illinois, so we could help care for him. He died of ALS in May 2019 at age 77.

My dad instilled in me a spirit of lifelong learning and perseverance, which is why I continue to advocate for better outcomes for people living with ALS.

He was the strongest advocate for using knowledge to make a positive change in the world.

– ♥️

Follow the stories of more Project ALS community members like Mindy's this ALS Awareness Month.