Living with ALSP — ALSP Info

Ron, President of the United Leukodystrophy Foundation

Janice, dedicated caregiver

Lisa, living with ALSP

“I was starting to walk difficultly. I said ‘would it happen to be what my father had?’, hoping upon hope that it wasn’t.”

Lisa

Gayle, dedicated caregiver

Adam, living with ALSP

“Seeing the companies that are getting involved and the research that is being done is incredible. It is getting to a point where we have a future.”

Adam

Madi, dedicated caregiver

Heidi, dedicated caregiver & President and Founder of Sisters’ Hope Foundation

“In the next five years, I hope to see a cure because I always worry about my brother.”

Madi

Heidi, dedicated caregiver & President and Founder of Sisters’ Hope Foundation

“Now more than ever, I definitely advocate for genetic testing. It is available, we should be using that tool to have an accurate diagnosis early on. You can make decisions now and start planning for the future.”

Heidi

Marla and Ron, dedicated leukodystrophy caregivers

“Don’t let the caregivers get burnt out. Let your guard down and allow people to come into your home.”

Marla