Meet Her ALS Story. In their own words: “We are a group of women diagnosed with ALS before our 35th birthdays. To challenge the stereotype that ALS is an older white man’s disease, we foster an open dialogue about our declining health in female-centric media outlets. We cultivate relationships with female lawmakers to improve current insurance and Medicare standards, and introduce legislation to speed up the drug pipeline. We raise money for the pursuit of unbiased, supercharged ALS research to ultimately end this devastating disease.”
A few months ago, Her ALS Story reached out to Team Gleason to see how we could assist on their upcoming Wellness Retreat. 16 members were taking part in a girls’ trip to Wisconsin to connect in-person. Team Gleason was excited to assist with cost of lodging for the group.
Joined by their amazing family and/or caregivers, the ladies were heading to Madison, WI. For many of them, it was the first time they would be meeting each other in person, as this group had members throughout the country. During the retreat, members of Her ALS Story took the time to document the intricacies of traveling with ALS.
Some members hopped in a car for road trips to Madison, while a few members decided to fly out to be there! In the videos below, Sarah shows us the intricacies of using an aisle chair to get to her seat on the plane, and then how she manages to, with the help of her husband, transfer into the seat.
The itinerary for the retreat included a host of wellness activities to help the ladies have some time to both adventure the city and to relax. On the first night, the group started their retreat with a Welcome Happy Hour at their hotel to make introductions, give hugs, and come together as a group for the first time. After a long night’s rest, the ladies met up for a morning stretch including a pilates session to prepare for all the upcoming fun.
That night, the group went on a Pontoon boat ride on Lake Monona. The water was beautiful and the views were spectacular. “Some of our members were excited to be on a boat again after their ALS Diagnosis,” said Her ALS Story member Sunny. The setting sun provided a beautiful backdrop as the boat Captain shared facts about the local landscape.
The next day started off with another pilates session, and then the ladies were treated to a spa day, including manicures, pedicures, and full body massages.
When asked how the group practices self care, member Jessica stated, “It’s important to still find time for the little things that make me feel like my old self and put together. Like getting a mani / pedi, getting my lashes done, or even doing a face mask!”
Another member, Shelly, shared that she practices self care by not going through things by herself. “Find your support network – family, friends, other pALS, a therapist or medical professional that you trust. Don’t try to fight this battle alone. Take time to process…focus on your mental health first and foremost.”
That night, the ladies enjoyed a cheese and wine tasting on the balcony of their hotel. Overlooking the city and the Capitol right across the street, Her ALS Story took some time to relish in the friendship and savor the moment. Being together in person, along with their caregivers, really strengthened their sense of community.
The group happily reports that they may have eaten way too much cheese and they really enjoyed the assortment of wine that was donated to the cause by Kendall-Jackson.
Her ALS Story also hosted a book club where they discussed the book You Are a Badass: How to Stop Doubting Your Greatness and Start Living an Awesome Life. Members had read the book leading up to the trip and took the opportunity to discuss takeaways from Jen Sincero’s refreshing how-to guide.
A major element of this trip was taking a tour of the Wisconsin State Capitol. Opened in 1917, the beautiful campus hosts both chambers of the Wisconsin legislature along with the Wisconsin Supreme Court and the Office of the Governor. The group received a guided tour of the halls. Watch the beautiful video below that highlights their tour!
When asked what going on the trip meant to them, members agreed with the following sentiment shared by Sunny: “The trip meant fortifying the bond we are building together, the effectiveness of our community, and loving each other through this journey.”
Team Gleason was thrilled to be a small part of the Her ALS Story Retreat. We are filled with gratitude to share friendship with Her ALS Story and to continue working alongside the group to further empower those living with ALS.
You can learn more about Her ALS Story by visiting their website and following them on Instagram here.