The ALS Association

Ice Bucket Challenge Progress

Youth Programming

For the past two years, The ALS Association has supported research conducted by Dr. Melinda Kavanaugh, a professor at the University of Wisconsin-Milwaukee, University of Wisconsin-Milwaukee. Dr. Kavanaugh has interviewed youths about what it is like to live with and care for a family member living with ALS. Most of the 60+ youth interviewed stated they had not received training or guidance for the care they provide, despite being very involved in tasks including fall prevention, bathing, feeding, and toileting. With no formal training, they expressed feelings of stress and a lack of understanding of what they were doing.

We know that many families are concerned about having their children being involved in care, and sometimes worry about how to talk to them about these activities. In order to advance support programs for youth who are providing care, we are developing, in conjunction with Dr. Kavanaugh, a pilot research and support program for youth to learn caregiving skills from ALS expert health professionals, while in a fun and supportive environment alongside other youth in families with ALS.

We are hosting a training session for youth ages 8-18, to include durable medical equipment, speech, communication, nutrition, and assistive technology, on Monday, May 14, 2018 (specific times to be finalized). This coincides with the 2018 Advocacy Conference, which is being held at the JW Marriott, 1331 Pennsylvania Avenue from May 13-15, 2018.

Skilled therapists and clinicians will provide basic skills and education in three main areas:

  1. Basic care – how to transfer, use rails, seats and chairs, and assist with dressing.
  2. Speech, communication, and nutrition – learn new communication strategies, preparing food textures, and cueing person for swallowing.
  3. Using assistive devices –includes power wheelchairs, non-invasive ventilation machines, and communication devices.

If you are attending the Advocacy Conference and have a youth(s) (ages 8-18) who would like to attend this program, please indicate this on the conference registration form. Space is limited; registration will be taken on a first-come, first-served basis. If you have any questions or would like more information about the youth training, please contact Melinda Kavanaugh, Ph.D., 414-229-4414,

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