Her ALS Story

Her ALS Story We are a group of women diagnosed with ALS before our 35th birthday who are challenging the stereotype that ALS is an old white man’s disease.
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Link in bio 🖕
08/17/2026

Link in bio 🖕

Hico’s Old Settlers Reunion Run to Remember
08/05/2026

Hico’s Old Settlers Reunion Run to Remember

Kate, Kelly and Alex got a chance to go see Zac Brown Band thanks to HopOnACure ash ALS Hope Foundation and John Driskel...
08/03/2026

Kate, Kelly and Alex got a chance to go see Zac Brown Band thanks to HopOnACure ash ALS Hope Foundation and John Driskell Hopkins 🎶🥁🎹🎸🎤

When a young woman is diagnosed with ALS, the clinical progression of motor neuron decline is only one layer of her real...
07/30/2026

When a young woman is diagnosed with ALS, the clinical progression of motor neuron decline is only one layer of her reality. Her true experience is biopsychosocial—an intense intersection of hormonal milestones, historical trauma, and acute life stressors.

Compounding Crises at Onset: Imagine noticing the first irreversible signs of muscle weakness or speech slurring while simultaneously carrying a pregnancy or fighting severe depression. In our community of young women, this isn’t a rare coincidence. 57.9% were in active mental health crises and 39.5% were pregnant when their ALS symptoms surfaced.

The Baseline of Trauma: These women are forced to process a terminal prognosis while carrying the weight of Adverse Childhood Experiences (ACEs), introducing complex historical trauma into an already overwhelming clinical picture.

Holistic care means looking beyond the clinical profile. To support young women with ALS, we must treat the whole person, not just the disease.

Living life and making beautiful memories!
07/30/2026

Living life and making beautiful memories!

Dan and Salym Liufau by themselves went to a very popular BBQ in Austin!
07/21/2026



Dan and Salym Liufau by themselves went to a very popular BBQ in Austin!

Her ALS Story has lost another beautiful sister, Lindsey Remines. Many of us had the pleasure of getting to meet Lindsey...
07/15/2026

Her ALS Story has lost another beautiful sister, Lindsey Remines. Many of us had the pleasure of getting to meet Lindsey in person last year at our annual Warrior Weekend Retreat and shortly after the retreat she had shared with the group that she made the brave decision to move into a nursing home.

Lindsey embraced living in the nursing home and was well known in the HAS chat for sharing hilarious nursing home stories, making the absolute best of her circumstances.

Lindsey’s smile was infectious and her humor and lightheartedness will be greatly missed by so many! We are sending her family and many friends our love and condolences during this time. We love you Lindsey! 💕

Check out this episode of I'm Dying To Tell You Podcast featuring Hannah and her husband Logan!
07/12/2026

Check out this episode of I'm Dying To Tell You Podcast featuring Hannah and her husband Logan!

07/11/2026

With a heavy heart, we share that HAS member Katie DeGregorio Silvestri has passed after a two-and-a-half-year battle with ALS.

Katie is an exceptional soul. She exemplified the congeniality, selflessness, generosity, kindness, and a truly rare, fearless and fierce spirit. She was the first to extend help, advice, or encouragement to persevere when the disease tested us. She would go without if you were in need. Her goodness was truly a light in a dark existence and inspired us to do and be better.

We’re thinking of her husband, daughter, and the countless people whose lives Katie touched.

Thank you Tri State Trek for highlighting our warriors! ALS TDI | ALS Research Institute Liz Faris Coccio Team Drea Foun...
07/01/2026

Thank you Tri State Trek for highlighting our warriors! ALS TDI | ALS Research Institute Liz Faris Coccio Team Drea Foundation Susan Asbury Stavenhagen

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