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Samantha Van Saun: Building an ALS Community

In this episode of the Endpoints Podcast, Dileep Dadlani, Development Director at ALS TDI is joined by Samantha Van Saun who is a Champion in ALS TDI’s ALS Community in Richmond, VA. Samantha has lost her father, uncle and sister to an aggressive form of ALS but is determined to fight back by raising awareness and funds for ALS research. Listen in to find out more about her families journey with ALS.

In 1981 Samantha’s father, Art Van Saun, was diagnosed with ALS at 42 and passed away 13 months later. At the time, Samantha and her family were told that the disease was sporadic and that there was no apparent genetic link and link and therefore no possibility that other family members or future children could inherit the disease.

However, over 30 years later in 2012, the family suffered another devastating loss when Art’s younger brother, Dave, passed away from ALS. And, more recently, it was confirmed that the family has a genetic form of ALS when Samantha’s sister, June, was diagnosed with ALS after noticing symptoms in October 2017 and passed away in January 2019 at the age of 51. Samantha describes her sister’s diagnosis was a “wake-up call” and since June’s passing, Samantha and her family have gotten more involved in the ALS community, advocating online and raising funds for ALS research at ALS TDI. In addition, Samantha has played a leading role in helping to establish ALS TDI’s ALS Community in her local area in Richmond, VA. ALS Community groups provide a space for people affected by ALS to come together in new ways. As a part of the community, members socialize, compare notes, learn about ALS resources, and share the ways in which ALS has impacted their lives.

Everyone, including those with ALS, family members, loved ones, and friends, are invited to join and attend events. If you would like to learn more about ALS Community in Richmond or in an area close to you, you can visit our website.

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