Amanda, 47, Facing a Rare Fatal Brain Disease

— Help Her

Live With Dignity

Amanda is only 47 years old and has been diagnosed with CSF1R Adult-Onset Leukoencephalopathy

(ALSP) — an extremely rare and progressive genetic brain disease.

ALSP damages the brain and nervous system, causing symptoms similar to Parkinson’s disease,

including muscle degeneration, seizures, difficulty swallowing, and severe neurological decline. There is currently no cure. While some research supports stem cell treatment, Amanda’s disease has progressed

too far for that option.

Amanda is currently working with five neurologists, including specialists from an MS clinic, as doctors try

to manage her symptoms and support her quality of life.

Amanda has been given 6 months to 6 years to live and has made the difficult decision to register for Medical Assistance in Dying (MAID) when the disease eventually takes over her nervous system.

This diagnosis is especially heartbreaking for her family as her father passed away from it when she was in her 20s and he was misdiagnosed. Today there are only 17 known cases.

As her condition progresses, everyday life is becoming difficult. Amanda receives about $1,800 per month in government assistance, which is just enough for rent, utilities, and phone bill. Her mother works part-time to help support her.

Thanks to the kindness of supporters here, Amanda was recently able to purchase a mattress that allows

her to safely get in and out of bed. She has also been using the funds to visit family in other provinces

while travelling is still an option.

However, she still needs support for:

• Moving to a safe, stair-free home

• Adaptive furniture she can safely get in and out of

• Non-slip rugs and safety items to prevent falls

• Medical care, healthy food, and supplements not covered by assistance

• Veterinary care for her aging support dog, Cali

One of the things that keeps Amanda going is her dog Cali, who gives her a reason to get outside each

day. Cali has been designated as Amanda’s support dog and now needs veterinary care for a

significant lump on her abdomen, along with ongoing medication for her hips and knees.

We are hoping to raise an additional $10,000 to help Amanda cover essential living expenses, medical needs, and the support she needs to make the most of the time she has left.

Even $10 or $20 can make a real difference for Amanda right now. If you are unable to donate, sharing Amanda’s story helps more than you know.