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;;;; ;;;;;;, at the age of ;;, Randie Lynn
was diagnosed with amyotrophic lateral
sclerosis (ALS)—also known as Lou Gehrig’s
disease. The progressive disease a;ects parts
of the nervous system that control voluntary
muscle movement, a;ecting a person’s ability
to speak, walk, eat and breathe independently.
There is no known cure for ALS, and patients
typically survive for about two to five years
Randie’s wife, Charnelle Bain-Lynn, now
transports him to and from doctor’s appointments and assists him at home. The West
Orange couple has two daughters, ;;-year-old Amaya and ;;-year-old Aubrey.
After Randie’s diagnosis, the family’s counselor connected them with Hope Loves Company (HLC), a nonprofit based in Pennington
that provides emotional and educational support
to children and young adults who have or had a
family member battling ALS.
There are ;;,;;; Americans living with ALS. Nearly
;; percent have a child or
grandchild. HLC is the only
organization dedicated to supporting the children in a;ected
families. It provides free resources, including children’s
books about ALS as well as care packages.
Founder Jodi O’Donnell-Ames’s late hus-
band Kevin was diagnosed with ALS at ;;. She
struggled to care for their young daughter while
also being her husband’s main caregiver until
his death six years later. “The well parent is so
preoccupied,” says O’Donnell-Ames. “Think of
the emotional toll that takes on the children.”
O’Donnell-Ames remarried, to a man who
also lost his partner to ALS. They observed that
their three children—all of
whom lost a parent to ALS be-
fore age ;;—were processing
grief di;erently. So in ;;;;, she started HLC to
help similar kids.
“Jodi is not someone who
started a foundation just be-
cause,” says Bain-Lynn. “She
lived what I am living.”
HLC’s programs include
three-day summer camps,
which are free and take place
in New Jersey and five other
states. “Our campers often say, ‘This is the
first time I haven’t had to explain ALS,’” says
The Lynn family attended a camp last year.
“All the kids there knew they had experienced the same thing,” says Bain-Lynn, who is
grateful for the support HLC provides.
“For me, helping is healing,” says
O’Donnell-Ames. “When you help a child,
you help parents.” —Shelby Vittek
“Think of the
[ALS] takes on
—Jodi O’Donnell-Ames, founder
SPOTLIGHT ON » HOPE LOVES COMPANY
“Helping Is Healing”
ALS strikes adults—but young family members are victims, too.
HLC aims to meet their emotional and educational needs.
To provide emotional
and educational support to children and
young adults who have
family members battling ALS.
In 2007; received
nonprofit status in 2012.
HOW TO HELP
Donations and volun-
teering at HLC events.
For information, visit
or contact the founder
4th Annual Night of
Family Fun Day, CoCo
Key Water Resort,
Mount Laurel, April 7
Camp HLC, Fairview
Lake YMCA Camps,
Stillwater, May 17-19