Virtual 5K raises money to provide free programming for children impacted by ALS

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A Veterans Day weekend virtual 5K race is helping raise funds for Hope Loves Company (HLC), which is dedicated to helping the families and children of people with amyotrophic lateral sclerosis (ALS).

The Pennington nonprofit’s virtual 5K started the weekend of Nov. 13 and runs through Thanksgiving weekend.

“We used to run a few different 5Ks in different parts of the country. Then, when COVID-19 hit last year, we pivoted to a virtual 5K and raised more than $25,000 last year,” said Gary Bachrach, incoming president of Hope Loves Company Board of Directors. “With the virtual 5K essentially people who live anywhere have the opportunity to run with a group of friends like my family and I in the Chicago area.”

Participants can run, walk or roll for the 3.1 miles and the race is free, according to the organization. Those participating are able to track the mileage with the Strava application.

People can still sign up to participate in the race or can contribute donations to an already established team for the 5K.

As of Nov. 19, $11,735 had been raised from the virtual race.

“I think we are going to hit our goal again of $25,000, which helps send kids to our camps,” Bachrach said.

The money that is raised goes toward the nonprofit’s free programming such as Camp HLC.

Camp HLC, which evolved out a family fun day originally started by HLC, is designed to relieve the toll that ALS takes on the families of individuals diagnosed with the disease and provide needed support to the children and adults who help their loved ones.

“Our No. 1 thing is our camps. It is a weekend-long camp where kids get to be kids,” he said. “They do fun playground things, fishing, sports, boats and get to meet other kids who are in the same situation. We see kids exchange their cell phone numbers and now they have new friends who also have a parent with ALS and someone who can relate to what is going on.”

The funds raised help provide the weekend camps for free nationwide to the kids.

“We also send out Hugs of Hope packages and have group shares and lead discussions with some of the kids, so we also use funds for emotional and educational support,” Bachrach said.

ALS is a fatal and progressive neuromuscular disease that affects 30,000 people in the United States and there are 5,000 new cases each year, according to John Hopkins University. The ALS Association has also indicated that veterans are twice as likely to develop ALS.

“The more people we can reach and make them aware the better it is for the cause. By doing this race in the virtual fashion we can reach more people,” Bachrach said. “People are aware of ALS due to things like the Ice Bucket Challenge, which focuses on the disease. We focus on the kids, so I think there is awareness of the disease and people may think of the patient, but people do not focus as much on say the nine-year-old kid, who is used to their parent tucking them in and it is the other way around.”

Hope Loves Company was established by founder Jodi O’Donnell-Ames. O’Donnell-Ames lost her husband Kevin Gerard O’Donnell in 2001 to ALS when she was 35 years old, and would marry Warren Benton Ames in 2003, who also lost his wife Tina to the disease.

After losing her husband in 2001, O’Donnell-Ames went on to create the nonprofit HLC. The nonprofit’s mission is to help provide educational and emotional support to children and young adults that have had or have someone living with ALS.

“We want to make people aware of the impact to children and think about for a moment what your childhood was like and what it would be like if you were living with a parent with ALS,” Bachrach said. “Help us raise enough money to help everyone who needs us.”

For more information about signing up for the Virtual 5K, donating money to teams and the nonprofit, and for information about upcoming camps, visit www.hopelovescompany.org or call 609-730-1144.