Her ALS Story (HAS) is an organization for women diagnosed with ALS before the age of 35. It strives to educate the public that ALS affects people of all ages, races, locations and genders. At a time in their lives when most women are establishing careers, finding partners and growing families, Her ALS Story members were dealt a terminal diagnosis with no available treatments to stop or reverse the disease. While ALS is extremely isolating, Her ALS Story provides a community for members that offers instant connection and support. The members raise ALS awareness and advocate to deliver better therapies to ALS patients faster, partnering with ALS nonprofits including Project ALS, I AM ALS and ALS TDI to support research and legislative initiatives.
Her ALS Story (HAS) organized its fourth annual retreat at the Sea Crest Beach Hotel in Falmouth, MA, which was the largest gathering of young women with ALS ever held. After forging bonds virtually, the annual meetup is a unique opportunity for 36 women from across the U.S., and one from Sweden, and their caregivers to meet face-to-face to bond, enjoy the beach, and share their stories to change the public perception of ALS.
Since the first in-person gathering in 2021, the annual retreat has become a vital tradition and has grown from 15 attendees to a record high of 36 attendees out of the group’s more than 100 members. The 2025 event blended moments of rest and reflection with celebration through beach time, a spa day with hair and makeup styling, and a disco drag show, as well as a special remembrance dinner to honor the members who have passed— an emotional reminder of the urgency of ALS research and the resilience of the community.
To drive awareness for Her ALS Story and the 2025 annual retreat, BIG FISH’s strategy included interviews, media invitations to the event, and post-event outreach. A media alert invited local Boston and Cape Code-area media to attend the event and interview the members.
A press release announced the fourth annual retreat, detailing the goals of the event and the record-breaking attendance. BIG FISH’s press release told the story of the groundbreaking gathering, drawing attention to the unique stories of the young women affected and challenging the perception that ALS is a disease only affecting older men.
Photos and anecdotes from the event were packaged up and shared with local media after the event, and BIG FISH offered interviews and email Q&As to support additional coverage.
The Her ALS Story 2025 annual retreat was a success and covered positively with a segment in NBC Boston and two pieces in Cape Cod Times, which shared stories of individual members and information about the retreat. Roni Rabin, a health reporter for The New York Times, attended the retreat with a photographer. BIG FISH coordinated post-event interviews with her, and she published an in-depth story about Her ALS Story and the retreat, which was picked up in Fortune’s MPW Newsletter that week, as well as shared in Boston.com.
The coverage collectively highlights the powerful community formed by young women living with ALS, emphasizing how connection, shared experience, and mutual support bring meaning and resilience to a group facing a disease often mischaracterized as affecting only older men. Across local and national outlets, the stories blend honesty about loss with uplifting portrayals of camaraderie, reshaping public understanding of who ALS affects and how these women are redefining what it means to live with it.
The New York Times travelled to Cape Cod to attend the retreat, speaking with many members and capturing videos of their trip to the beach, makeup session, and disco drag show.
A special thank you to Liz Linder Photography for being an amazing photographic lens and visual communication partner for this campaign. Below are a select few of their photos from the event:
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