The Young Women Grappling With an ‘Old Man’s Disease’
Amyotrophic lateral sclerosis, or A.L.S., is a progressive neurodegenerative disease that affects motor neurons responsible for movements such as walking, speaking, eating, and breathing. It causes loss of these movements over time and there is no cure.
Commonly known as a disease affecting older men, Her A.L.S. Story brings together women who have been diagnosed in their 20s and 30s, and provides a place for them to discuss topics and issues uniquely affecting them. The five-day annual retreat this year brought together women from all over the country and internationally to give them an opportunity at normalcy, to meet others and see old friends, to go to the beach, get their hair and makeup done, to dance, to celebrate their life.
The New York Times
Reporter: Roni Caryn Rabin
Photo Editor: Matt McCann
Andrea Lytle Peet, 44, shows her tattoos, each swallow symbolizing a year since her A.L.S. diagnosis.
Karin Pacold talks with Desiree Galvez Kessler, who was diagnosed with A.L.S. shortly after giving birth.
Frida Hansson traveled from Sweden to attend the retreat.
Sunny Brous has been a strong advocate in the A.L.S. community and traveled from Texas to attend the retreat.
Brous's tattoos symbolize her A.L.S. story and commemorate friends who have died.
Laura McNew-Isaacs, 35, getting her makeup done ahead of a dinner and a show.
Pins on the back of Laura McNew-Isaacs's wheelchair.
Josh Isaacs helps his wife Laura McNew-Isaacs pet a dog by guiding her hand.
Wendy Ogando with her niece Brianna Salgado, who traveled from Miami to attend the retreat for the first time.
Leah Stavenhagen, 32, started Her A.L.S. Story in 2021, two years after she was diagnosed with A.L.S. She wanted to connect with other younger women with the disease.
Susan Stavenhagen, right, does her daughter Leah’s hair.
Desiree Galvez Kessler, who has lost her ability to speak, communicates with her speech generating device controlled via eye tracking.
A'Tileana Gipson, 29, has two children and started a line of merchandise called "KissMyALS" to raise awareness.
Micah Johnson, 20, experienced her first A.L.S. symptoms while still in high school.
Attendees of the Her A.L.S. Story Retreat, including Jessica Northrop, dances during a drag show at Coonamessett Farm.
Leah Stavengen dances with the help of her husband.
Attendees and their families end the night with music and a drag show.