Written November 2021 – The holiday season has been a wonderful time to observe the generosity of our community. I have the privilege of witnessing the impact that pALS, caregivers, family, friends, clinicians, and donors have had on those impacted by ALS. Gifts to the ALS community can take many forms and aren’t limited to just one season. Here are some ideas for ongoing ways to contribute to the ALS community, with a communication-centered theme.
How the pALS support team can give: Anyone supporting a pALS or interested in contributing to the communication needs of pALS can consider the following ideas to donate your voice, equipment, or expertise.
Voice Donation: Voice banking is a method of voice preservation, where a person can have a custom synthesized voice created after recording phrases in their own voice. It should be completed before the person experiences significant voice changes for the best results. However, not all pALS who need to use synthesized voices on speech devices have the chance to complete a custom voice in time. Relatives or friends whose voices sound similar to the pALS may choose to voice bank for the pALS (voice banking by proxy) and anyone who is interested can audition to donate their voices anonymously. ModelTalker seeks voice donors and offers donated voices to speech device users for free or a $10 fee (https://www.modeltalker.org/donating/) and VocaliD seeks donated voices to blend into customized synthetic voices as a part of their Bespoke Voice product which is purchased by speech device users (https://vocalid.ai/voicebank/).
Equipment Donation: Thanks to improvements in technology, many pALS with communication impairment can use everyday technologies such as smartphones, tablets, and laptops as speech devices. When upgrading your tech, see if your gently used tools may be accepted for donation in an ALS loan closet. Often items that are able to run current operating systems and apps that are in good working order can run communication/speech apps for pALS.
Technology Support: Are you tech savvy? Know the ins and outs of uploads, downloads, apps, file transfers and the internet? Many important tasks for digital voice preservation (such as voice and message banking) and the use of communication devices and tools require the use of technology. Those on a support team of a pALS with these skills may consider offering their time and expertise to ease the learning curve for pALS who want more help with tech.
How pALS can support pALS: Those living with ALS and interested in helping develop communication technologies for the future or to help other pALS in their journeys may consider these ideas.
Project Euphonia: Speech recognition tools such as Google Assistant, Apple Siri, and Amazon Alexa currently work best with speech that has not been impacted by ALS. Google Research has developed a project to try to help make Google Assistant and Google Home more accessible to people whose speech is difficult for others to understand. They are seeking volunteers with speech impairment to make voice recordings in exchange for a gift card. More information can be found here: https://sites.research.google/euphonia/about/
Clinical Trials and Research: Many pALS have understandably shared questions and concerns about whether their speech will be affected, the speed of symptom changes, or whether they will be dependent on a speech device. Others wonder whether technology could serve them better. Because of these questions, some pALS choose to participate in research. The ALS Therapy Development Institute offers a Precision Medicine Program, which allows pALS to track and share a wide range of data about their health (including voice/speech recordings) with researchers: https://www.als.net/precision-medicine/. They also have a listing of clinical trials: https://www.als.net/als-research/als-clinical-trials/. Clinical trials can be narrowed down by search terms, and for those interested in speech research, terms such as “speech,” “communication,” and “brain computer interface” can specify results to these topics.
Peer Mentorship: New ideas, encouragement, and sharing of experiences are often most meaningful from others who have direct experience with what you are going through. Consider offering to connect with other pALS new to voice preservation (voice and message banking) or using a speech device or app.
Self-care: It’s also important to acknowledge that it’s okay if you are in a season of resting or receiving. Taking time for yourself, asking for help, and recognizing the real challenges associated with the possibility or experience of communication impairment will only help you to be the best communicator you can be. For patients of the Susan Mast ALS Foundation, contact SLP Natsumi at 616-622-3066 ext. 4 or firstname.lastname@example.org for more information on how the Jim’s Voice program can help.