ALS fundraiser for Abby
Donation protected
Abby is an amazing person. She's been my partner for the past 18 years and the love of my life. She's the absolute best mother our son could possibly ask for. She's a caring daughter and sister. A loyal friend. A world traveler. A lover of good music, food and art. Someone who devoted her entire career to making sure kids with hearing loss and developmental delays get the therapy and services they need. And now, she's an ALS patient.
ALS causes motor neurons to die, meaning you slowly lose the use of your arms and legs, your ability to talk, and eventually your ability to eat and breathe. There is no cure, only two FDA approved drugs to address the symptoms, and it is fatal 100 percent of the time, usually within 3-5 years of diagnosis. To compound the issue, ALS is one of the most expensive diseases you can have—estimates for ALS cost of care are as high as $150,000-$200,000 per year .
We are fortunate in that we have good health insurance through my work, and Abby gets great care through the Johns Hopkins ALS clinic, most of which is covered by insurance. What insurance doesn't cover is loss of income, and most of the gear and home modifications you need.
I started this fundraiser to help offset the cost of things that insurance doesn't cover (or only covers a portion of), things like:
- Custom power wheelchair (needed for ALS patients): $97,904 [mostly covered by insurance, luckily]
- Ceiling-mounted overhead patient lift: $4,000
- (Used) van with wheelchair lift: $14,600
- Home modifications (ramp from outside, ramp inside, other minor accessibility modifications): $56,744
- Eye gaze communication device: $4,500
- Other accessibility modifications: $4,650
- Bottle of wine: $15
Just those few items alone add up to $182,400. Any support people can provide is greatly appreciated, and will go 99.9%* to Abby's care (*Note: 0.01% will go towards wine).
In addition to making a donation here, please consider donating to the following:
ALS Foundation : provides funding for research and small grants for ALS patients, among other things.
ALS Therapy Development Institute : A nonprofit research organization dedicated solely to finding treatments and a cure for ALS.
ALS causes motor neurons to die, meaning you slowly lose the use of your arms and legs, your ability to talk, and eventually your ability to eat and breathe. There is no cure, only two FDA approved drugs to address the symptoms, and it is fatal 100 percent of the time, usually within 3-5 years of diagnosis. To compound the issue, ALS is one of the most expensive diseases you can have—estimates for ALS cost of care are as high as $150,000-$200,000 per year .
We are fortunate in that we have good health insurance through my work, and Abby gets great care through the Johns Hopkins ALS clinic, most of which is covered by insurance. What insurance doesn't cover is loss of income, and most of the gear and home modifications you need.
I started this fundraiser to help offset the cost of things that insurance doesn't cover (or only covers a portion of), things like:
- Custom power wheelchair (needed for ALS patients): $97,904 [mostly covered by insurance, luckily]
- Ceiling-mounted overhead patient lift: $4,000
- (Used) van with wheelchair lift: $14,600
- Home modifications (ramp from outside, ramp inside, other minor accessibility modifications): $56,744
- Eye gaze communication device: $4,500
- Other accessibility modifications: $4,650
- Bottle of wine: $15
Just those few items alone add up to $182,400. Any support people can provide is greatly appreciated, and will go 99.9%* to Abby's care (*Note: 0.01% will go towards wine).
In addition to making a donation here, please consider donating to the following:
ALS Foundation : provides funding for research and small grants for ALS patients, among other things.
ALS Therapy Development Institute : A nonprofit research organization dedicated solely to finding treatments and a cure for ALS.
Organizer
Owen Scott
Organizer
Silver Spring, MD