educate. advocate. support
educate. advocate. support
We bring years of experience and expertise in children and youth, ALS/.MND, marketing, non-profit work, and the corporate world. Not to mention finding fun and laughs with friends and colleagues around the world!
Founder, Board President
Dr. Kavanaugh is a professor of social work, and licensed clinical social worker with expertise in neurological disorders. She conducted the first study. of youth in families living with, and caring for a family member with ALS/MND. She created the care and support programs for youth "YCare", written several books for youth and families and developed collaborations around the work adapting and translating her books and programs.
Board member, secretary
Judine is a pastor, currently serving St. John’s UCC in Sheboygan, Wisconsin. She specializes in pastoral care and counseling and is trained as a marriage and family therapist. Through the United Church of Christ WI Conference she served in statewide leadership roles and as a member of the Board for World Ministries. Judine has served as
a board member for various nonprofits statewide. Beyond her ministries she has served as a family therapist for the Sheboygan County Health and
Human Services in Child Protective Services, as well as community shelters. In addition, Judine has toured schools nationally with The Stutman Group addressing parents regarding the hardships of substance abuse.
Board member, Foundation Financial Officer
Nidal is a CPA and MBA, with over 25 years experience in corporate finance, including manufacturing and service industry. In addition to his corporate finance expertise, Nidal has served as the financial officer for the Wisconsin chapter of the HDSA.
Board Medical advisor, ALS/MND expert
Associate professor or Neurology. Areas of expertise include motor neuron disease, inflammatory myopathies and inherited myopathies. Chairman, MNDA South Africa.
Luka and the Lights writer, creator
Sascha is an elementary school teacher, author, illustrator and the creator of Luka & the lights. Sascha is married to Anjo, living with ALS since 2017. Together they have two young children. Her experiences as a caregiver, mother and teacher have inspired her to create educational materials to help families around the world living with ALS/MND.
Anjo is a teacher, educational innovator and currently in the army as an education & training designer. Diagnosed with PSMA since 2017, together with his wife Sascha he wrote the story Luka & the lights and based on her illustrations Anjo designed the 3D model of Luka.
He thinks it is very important to show his children that, even when you are sick, you can be of value to someone else. He shows this in his work for the Dutch Army, his help to friends and family and by his incredible commitment to Luka. His motto is therefore:
"It's not about what you take with you,
but about what you leave behind "
Janna met Sascha as daycare worker for her son, and now their children are schoolmates. In daily life Janna works as a studiomanager for a small AV-company. Making sure people can do their work is what she does. When Janna heard about Sascha's plans with Luka & the Lights, why not try and do the same for her, she thought. Whatever is needed to keep the process going, writing handouts, connecting the right people, making sure Sascha doesn't worry to much, driving Luka and the team to photoshoots, appearing on shows, Janna is on it. As part of the creative team Janna has worked on the script and helps Sascha visualising her ideas.
"In sickness or in health, I find it gives my children peace of mind when they know what's going on. That's why I think it's very important for children to understand what ALS is and what's about to happen in the family and to their loved ones."