Witnessing the Love From Those Living With ALS

What I love most about working for the Susan Mast ALS Foundation is the privilege of witnessing the various expressions of love within the ALS community. 

The love from those living with ALS. The person with ALS (pALS) who shares her experiences with voice and message banking to encourage peers in support group to take action. The pALS who learns how to use an eye gaze speech device to say “I love you” to his family. The pALS who learns about her communication options proactively take care of her future self. The pALS who records readings of children’s books for his grandchildren. 

The love of family and friends of pALS. The family members who reach out to learn about ways they can improve their own communication skills to ease the burden of communicating with speech impairment for their loved one with ALS. The spouses who overcome their unfamiliarity with technology to learn how to program a speech generating device with custom messages for their partners with ALS. The best friends who take charge of the voice recording and uploading of message banking phrases. 

The love of the community coming together for our pALS. The ALS clinic speech language pathologists (SLPs) who reach out to us after witnessing a patient’s need for a speech generating device. The SLPs who connect with us to learn new skills to better support their patients residing in their facilities. The local and national ALS support organizations who share best practices and resources. The outpouring of participation and support from community businesses, organizations, and individuals during fundraising efforts to support what we do. 

Finally, I love working with a team whose members each love what they do and commit themselves to do better for our patients, families, and community.

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