When Raquel Pozzani was introduced to Target ALS through a mutual connection, it was for a reason no family wishes to face: her father, Valdir, had been diagnosed with ALS. Within two years, his health declined rapidly, leaving him bedridden.
For Raquel, who shares a uniquely close bond with her father, the impact was devastating. “It’s like being buried alive,” she said. “Unbelievable and sometimes unbearable.”
Before ALS entered their lives, Valdir was the picture of health: an active cyclist, a man who never spent time in hospitals. To watch such vitality transform so quickly into fragility left the family reeling. But amid the grief, Raquel and her family have discovered resilience, unity, and unexpected beauty.
Living with ALS: Pain, Faith, and Small Victories
Raquel describes their journey as one filled with pain but also courage, faith, and perseverance. “Life is always worth living, despite all you’re facing,” she reflected. Even when her father resisted a tracheostomy surgery, she reminded him of recent FDA approvals for ALS therapies, urging him to hold on a little longer.
The family now celebrates moments once taken for granted. Despite his condition, Valdir insisted on attending Raquel’s birthday and other family events. “It’s a sign of loyalty,” she said. “Look, I’m here for you. I’m in poor condition, but I’m still here.”
The Power of Connection
ALS has brought the Pozzani family closer together and revealed the depth of love from their wider community. Friends and former colleagues regularly visit Valdir, offering strength and comfort.
“I never saw my dad cry before,” Raquel shared. “But he cried so much when he saw how many people showed up for him. Life surprises you, even people you thought you’d never see again came to show their love.”
This sense of community extends beyond family and friends. When Raquel attended the Target ALS Annual Meeting in Boston, she was inspired by the scientists working urgently toward new treatments. “Every minute invested is so important,” she said.
Hard Truths and Lessons for Families
Raquel speaks honestly about the challenges families face: the emotional weight, the need for constant adaptation, and the financial strain of care. In Brazil, where her family lives, finding skilled caregivers and accessing treatments is especially difficult. The family even had to pursue legal action against their insurance provider to secure support.
Still, she encourages those going through something similar to notice the light that still exists. “Despite everything, there is space for gratitude and love. You learn to live in the present. You value every gesture. Even in the hardest moments, it’s possible to find beauty.”
A Call to Scientists and Beyond
Raquel is determined to contribute beyond her own family’s journey. She is working to connect Target ALS with top Brazilian universities to open doors for new research and clinical trials.
Her message to the scientific community is clear and urgent: “Keep going. Entire lives depend on this dedication.”
Her words reflect what so many families touched by ALS feel: deep admiration for the scientists and caregivers fighting this disease, paired with an urgent plea for progress.
Why We Share Stories
At Target ALS, we believe that stories like Raquel’s remind us why our work matters. Every dataset, every discovery, every collaboration brings us closer to treatments. Families like the Pozzanis are holding on to hope, and they deserve a future where Everyone Lives.
