Finding Community After an ALS Diagnosis
Liberare is excited to partner with Her ALS Story (HAS), a community for young women living with ALS to lean into and advocate for better, more effective treatment options. ALS is a progressive neuromuscular disease that affects nerve cells in the brain and eventually stops communicating with the arms, legs, neck, tongue, throat, vocal cords, and lungs. As two organizations both committed to empowering disabled babes, Liberare is excited and honored to amplify their voices today. Be sure to follow HAS on Instagram and Twitter!
Tell us a little about yourself, why you started Her ALS Story and your dedication around the advocacy of ALS.
Hey, I'm Leah and I'm 29. Before ALS rocked my world, I was living my best life in Paris--finishing up a master's degree and starting to work in Consulting.
Fast forward to today, I am still living my best life but have had to make a few changes. I split my time between New York and Paris, and, when I'm not working on things for Her ALS Story, I love good food, exploring new places, pretending to be French and, of course, hanging with friends and family. Also, a recent guilty pleasure: Love Island.
When I learned that I had ALS, I yearned to find other young women who faced the same diagnosis, but came up empty-handed. For a while, this was okay because I was trying my best to ignore my reality. ALS isn't actually that rare, and the stereotype that it is an old white man's disease is certainly incorrect — there had to be someone else out there who looked like me and was also facing this beast. Someone who understood the struggle of not being able to fit foot braces into heels, or of trying to do your hair and makeup when you can no longer hold up your arms.
In time, I felt ready to share my story and to get involved with advocacy. Thanks to the support and encouragement of a few mentors, I started Her ALS Story in the spring of 2021. It was a way for me to find purpose and peers in the face of disease. It has grown into an incredible community of powerful young women and I feel fortunate to get to spend my time working on ALS advocacy alongside them.
Why are groups like Her ALS Story so important to the disability community?
Living with a disease or disability can be incredibly isolating, so it is important to expand your world and find others who fully comprehend what you are going through. Her ALS Story represents just this because it is a strong community of dynamic young women who are redefining what it means to have ALS. For us, it is an incredible network of friends who we can relate to. For the outside world, we are helping to spread the word that living with a disability does not make your life any less meaningful. For too long, people living with disabilities have been ignored when, in fact, one in four Americans have one.
Her ALS Story is built up of disabled women under the age of 35, tell us a little about what you do in your community and the importance it has on the women involved in it?
Today, Her ALS Story regroups over 50 women diagnosed under 35 to both build a network for us to lean into and build a platform to use our energy to raise awareness and help accelerate the path towards better, more accessible treatment options.
HAS is important to the women in it because it is a safe space where we can literally discuss anything: from sex to sports to the best toothbrush to use when you have limited dexterity. We share tips and tricks, and are just there for one another. On top of this, the group provides a platform for us to advocate together. Many of us have had to retire early so it is a way for us to do purposeful work in hopes of moving the needle forward.
We love the strong community you have brought together and all of your fundraising achievements, what do you hope for the future of ALS for this and future generations?
The short answer is effective treatments to turn ALS from terminal to chronic, while we eagerly await a cure.
In the meantime, let's get ALS on the national agenda because it is a disease that can affect anyone at anytime; it does not discriminate. We need the government and insurance companies to recognize us as a group of patients with specific needs. We also need pharmaceutical companies to focus significantly more resources towards understanding and treating neurodegenerative diseases.
Desi mentioned that you have just come back from your first group trip, a wellness retreat in Madison WI, tell us a little about how that went! Desi mentioned it was positive and emotional, feel free to elaborate on this!
Erin, one of our incredible members, dreamed up the idea of getting together for a few days of relaxation, fun and sisterhood about six months ago. She outdid herself and it was the most magical trip, complete with spa treatments, excellent food, pontoon boat rides and the best company.
Amazingly, 15 of us were able to make the trip to Madison from all across the country. It was truly special as many of us were meeting in person for the first time. It was equally incredible to see the community support we received to make it happen. We were all brought together because of ALS but our friendship goes way beyond that<3
We love love love your ALS Life Hacks page, do you think the ALS community would love to have adaptive intimates?
Absolutely! Everyone wants to be able to feel hot and wearing sexy intimates can totally help to achieve that.
With ALS, we are constantly adapting to our changing bodies. Finding undergarments that are universally designed can be a game changer--they can mean being able to hold on to the independence of dressing yourself for a little bit longer. Beyond that, more accessible clothing can also make it easier for our caregivers to help us get dressed.
All around, we love Liberare and hope to see more companies following your lead!!