In late 2022, Live Like Lou awarded nine ALS families with grants ranging from $1,000 to $2,500 each to complete home improvement projects that became necessary following their loved one’s ALS diagnosis. This pilot grant program was launched in the Mid-Atlantic/Chesapeake region (serving parts of Delaware, Maryland, New Jersey, Pennsylvania, Virginia, and West Virginia) thanks to a generous $7,500 grant from the UPS Foundation in that region. Live Like Lou matched this gift and awarded a total of $15,000 for this pilot program.
We are just four months beyond when families received their grant funds and we have heard from several families with stories about the impact of these funds on their quality of life:
Thomas, who is living with ALS, has a backyard he enjoys, but its steep hill provides an accessibility challenge. With a lack of both help and funds, this grant allowed him to do the work—which he completed with use of only one of his hands due to his ALS progression—to make the yard more accessible and enjoyable.
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Adding a ramp to the house and enclosing the bedroom for more privacy were essential for Joseph as his ALS progressed. The funding provided by Live Like Lou paid for the lumber for the ramp and work has started on enclosing the bedroom. The ramp was built free of charge by the family’s volunteer friends.
“We were able to go out and have a nice dinner with our parents and if we hadn’t gotten the ramp and the funding, he would still be inside the house. It is truly a blessing what you all do!”
Funding was used to upgrade electrical panels and purchase smart switches and outlets for Stephen, who is living with ALS, so he can utilize his eye gaze device to give commands to their smart home controls to operate the television, lights, fans, and awnings in the home. This provides Stephen with additional independence in and around the home and the funding allowed reprieve as parents of an 11-year-old with limited finances for non-essentials. Check out this video of Stephen utilizing his new technology at home!
The goal of their renovation project was to make the master bathroom accessible for Cathy, who has ALS. Accessibility for Cathy’s wheelchair was a necessity, but it also helped make it more workable for her caregivers, too. The walk-in shower, vanity sinks, soaking tub, and enclosed toilet were gutted to make room for two ADA sinks and medicine cabinets, 180-degree access to the toilet, and a custom shower that allows for a roll in shower chair and room for caregivers to bathe Cathy. Radiant heat and an upgraded exhaust fan provide a comfortable environment for bathing and grooming. The entry door to the bathroom was also enlarged to a 32-inch door with a threshold for ease of access for wheelchairs. All labor was provided free-of-charge from the family’s network and Cathy’s friends.
“It is hard to express our gratitude for your generous gift,” shared the Joneses. “Everyone that has been touched by ALS understands the financial burden. We have an incredible support network and consider Live Like Lou a part of that network. Incredibly compassionate and equally resourceful. You folks do incredible work!”
The family’s two bathrooms had leaking wax seals and damage to flooring. Water had leaked through the walls and damaged exterior walls. Significant wood rot was able to be remediated along with siding replaced and a handrail added to the upstairs hallway for Thomas, living with ALS, to safely navigate the house.
To add a bathroom to the main level of the house, contractors had to wall off part of a bedroom, run water lines, move sewer pipes in the basement, remove a window, and update electric wiring. Most of the labor was donated by local contractors. The funding awarded by Live Like Lou paid for the drywall, a new toilet, shower, grab bars, lighting, and exhaust. While the project is not yet complete (final steps include changing the door and cosmetic features, such as wall spackle and paint), the funding has made a huge difference and the family looks forward to its finished state.
“I am so grateful, and I can shower without going up and down stairs,” shared Sarah. “My ALS is in my right leg, so walking is a challenge. I am so happy.”
This pilot program and its impact and benefit to these deserving families would not have been possible without the investment of the UPS Foundation. Live Like Lou’s home improvement grants will launch nationally later this spring for registered Live Like Lou families with applications accepted and funds awarded on a rolling basis. Email us at info@livelikelou.org for more information.
