Personal relationships are often complicated – whether they’re with family, a romantic partner, or even friends. This can be especially true when someone is dealing with a disease like amyotrophic lateral sclerosis (ALS). An ALS diagnosis can affect nearly every aspect of a person’s life. 


Many people with the disease will eventually have to rely on technology and the assistance of caregivers to do things as simple as visiting a friend, communicating with a partner, or attending a family gathering. Often, friends, family, and partners become caregivers for people with the disease – an arrangement that can strain even the strongest relationship.


Conversations about these kinds of relationships can also be difficult – touching on very personal, and sometimes painful, subjects. However, they can also be a source of joy and moral support. 


To give people the space to talk about these sensitive topics, the Young Faces of ALS (YFALS) and Her ALS Story are partnering with the ALS Therapy Development Institute (ALS TDI) to present a series of online Town Hall discussions. 


Each of these three sessions will feature guest speakers from the ALS community who will share candid stories about their personal experiences. Attendees will then be able to participate in an open discussion where they can share their own experiences and ask questions. These events will not be recorded to allow for an open discussion.



The dates and topics for these Town Halls are:


    • Friendship and ALS – February 21, 2023 – One of the most common comments we hear is how hard it is to maintain friendships once someone is diagnosed with ALS. Join us to hear examples of friends who are making the best of a difficult situation, examples of how to support a friend with ALS, and how people with ALS can continue to support their support squad! 

    • Family and ALS – March 21, 2023 ­–Although family dynamics are always different, one thing in common is wanting to find ways to best support each other through the good and bad (tough?) times. Join us for a discussion on Family and ALS from many different perspectives – from living with ALS, caregiving for a family member with ALS, family planning and ALS, and being a parent with ALS. To sign up to attend this Town Hall, click here.


    • Intimacy and ALS – April 21, 2023 ­– From dating and relationships to sexuality and your sex life, ALS changes a lot. This special 1.5-hour-long ALS Town Hall will attempt to cover the many ways that intimacy can be affected by ALS. This session will not be recorded to protect the privacy of the community and we welcome everyone to join us for a respectful and open discussion.


Her ALS Story is an organization founded by women diagnosed with ALS before their 35th birthday whose mission is to raise awareness of the disease and the diversity of the people it can affect. The Young Faces of ALS, similarly, is a group of young people affected by ALS, including people with the disease, caregivers, and family members, who work to promote awareness and support research at ALS TDI. While these two groups both represent young people involved in the fight to end ALS, people of all ages are encouraged to attend and contribute to these discussions.



To learn more and register to attend these events, visit https://www.als.net/als-town-hall/.



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