Local Company Hopes To Dump Some Cash Toward Curing ALS
A local landscape and construction firm is banking on the goodwill of customers needing a dumpster to help a local family who lost a loved one to the insidious disease amyotrophic lateral sclerosis (ALS).
Rob and Necole Manna, principles with LRM Inc, were among close friends who circled around the Biscoe family back in 2012 and early 2013 as they endured the loss of Bruce Biscoe, who was diagnosed with the progressive neurodegenerative disease.
Since his passing, Bruce’s family — his widow, Linda, and three children — have been supporting the fight to find a cure. This year, as the Biscoe family and a group of supporters began preparing to participate in the October 6 Walk to Defeat ALS, the Mannas hit on an idea.
“Bruce was an excavator from Newtown like Rob and a bunch of guys here,” Necole Manna told The Newtown Bee, “and we are very close with his wife and family. So we decided to paint and decorate a container to support ALS research.”
So the couple, along with fellow LRM staffers, prepped and painted a 15-yard commercial dumpster commemorating their dear friend.
“So we’re now renting this container out about every two weeks, and for each rental, LRM will be giving $100 toward the family’s fundraising for ALS research.”
Ms Manna knew Linda Biscoe is a big advocate for ALS, and each year she and her husband join the family at ALS walks.
Ms Biscoe writes on her fundraising page that “when Bruce passed away on January 11, 2013, I made it my goal to continue to support the Connecticut Chapter of the ALS Association.”
Her team — aptly dubbed “Bruce’s Buddies” — have a goal to raise $100,000 in ten years.
“We currently have raised over $91,000 so we are close,” Ms Biscoe said.
On her walk fundraising page, Ms Biscoe advocates on behalf of staffers at the Connecticut ALS Association office, “who are always there to support patients with ALS (pALS) as well as caregivers of those with ALS (cALS).”
She sees those staffers and volunteers working to “help provide rides to and from doctor’s appointments, retrofitting homes so patients can remain there (like Bruce was able to do), supporting the emotional toll both on patients and their families with support groups held in various locations around our state, and loaning equipment to make living a bit easier when fighting for every step, word, bite, and breath.”
One recent evening, the Mannas invited Linda Biscoe and two of her three adult children, Brad and Jessica, to the LRM garage on Commerce Road for a surprise unveiling of the inscripted dumpster. When they walked into the garage and saw the unit, Ms Biscoe was momentarily overwhelmed before turning to Rob Manna and throwing her arms around him in appreciation.
As the family walked around, checking out the fundraising “vehicle,” Ms Manna said she and Rob would ideally like to limit the dumpster rental to household or commercial renters for two weeks, to maximize the chance of helping the Biscoe family hit their $100,000 donation mark this year.
“The two-week rental rate, including delivery, pick-up, and the disposal of contents, is $300, and we’re giving back one-third of every rental to the cause,” she said. “Currently, there is no cure, and ALS can touch one in every 400 people. That means at any given moment, there are a number of Newtown residents fighting this disease.”
Ms Biscoe said that her late husband was diagnosed with ALS (also known as Lou Gehrig’s disease) in November 2008.
“ALS is a 100 percent fatal neuromuscular disease,” she writes. “ALS attacks the nerve cells in the brain and spinal cord that control voluntary muscle movements, like chewing, walking, breathing, swallowing, and talking. It is invariably progressive. Lacking nervous system stimulation, the muscles soon begin to weaken, twitch, and waste away until individuals can no longer speak, eat, move, or even breathe on their own.”
Through all this, Ms Biscoe said the mind is unaffected.
“There is no known cure, although the past few years’ Ice Bucket Challenge has really increased awareness and funds to help find a cure,” she said.
For 22 years, there was only one drug available to pALS, Rilutek, which only increased the lifespan by a few months, she said.
The Biscoe family was thrilled to learn, however, that on May 5 of this year, a new drug called Radicava was approved by the FDA that is said to slow progression of the disease in a six-month study in Japan, though its effects on survival are not yet known. It must be administered intravenously for ten days every two weeks at a cost of more than $145,000 a year for the medication alone.
Ms Biscoe said ALS usually kills so quickly that many do not experience the difficulties and challenges of anyone living with this disease.
“Only one person in ten with ALS is likely to live for a decade or longer,” she said. “The disease is most commonly diagnosed in middle age, among people in their 50s or 60s, though it sometimes afflicts young adults. [The late]Dr [Stephen]Hawking [1942-2018] was found to have it at age 21.”
Early symptoms can be very subtle and thus are often overlooked or attributed to a minor problem like lack of sleep, undue stress, overwork, or poor diet, Ms Biscoe said on her site. However, the underlying damage can start long before the symptoms are noticed.
“Given the redundancy built into the brain, about a third of motor neurons are destroyed before signs of muscle loss become apparent,” she said.
Initial symptoms depend on which group of motor neurons are affected first. In about 70 percent of people, the first symptoms involve muscle weakness in the legs or arms that can result in frequent tripping, instability, stiffness, difficulty walking, or inability to open a jar or turn a key.
About one-quarter of cases start with muscle loss in the face, mouth, and throat, resulting in slurring of speech and swallowing difficulties, and in five percent, the muscles of the trunk are first affected. However, in most people, the disease soon spreads to affect nearly all voluntary movements.
“Patients usually retain control over bladder and bowel function and eye movement until very late in the disease. In fact, after losing the ability to speak or write, many learn to communicate by looking at letters or words on a computer and using a voice synthesizer,” Ms Biscoe said, apologizing for the graphic nature of the information that she and her own loved ones witnessed first-hand.
On October 6, family, friends, and Ms Biscoe are participating in the Walk to Defeat ALS at Lighthouse Point Park in New Haven. The event begins at 11 am with check-in at 10 am.
“The walk raises funds, creates awareness, and gives us all a sense of hope,” she said. “If you’d like to walk with ‘Bruce’s Buddies,’ just let me know.”
Ms Biscoe reminds anyone looking to support ALS research and services, that “it is more important to raise money for the cause than walk… but it’d be wonderful to show support. Whoever wants to come with us is more than welcome.”
This year, as the Biscoe family and Bruce’s Buddies have done since his passing, they will be having a picnic lunch at Lighthouse Park after the walk. Participants are encouraged to bring a salad or dessert or drinks to share.
While the dumpster rental can be arranged by contacting Necole or Rob Manna at LRM (203-426-4383), Ms Biscoe says no direct donation is too big or too small to make a difference.
Donations can be mailed to the Biscoe Family at 47 Old Hawleyville Road, Newtown CT 06470. Or supporters can visit Linda Biscoe’s Facebook page, where they can easily make a tax deductible donation online with a debit/credit card.
“Checks can be made out to The ALS Association and mailed to me to forward to the ALS office,” she added. “Donations are accepted year around, so no need to worry about not having it in by October 6. And if you’re going to walk, I would like to know that by October 1.”
Interested supporters are also invited to participate in the September 29 walk at Rentschler Field in Hartford or on October 19 at Sherwood Island in Westport. Learn more at facebook.com/alsact.