By Carol Britton Meyer

An Oct. 9 walk along Nantasket Beach aims to raise awareness of the life-altering auto-immune disorder PANS/PANDAS, as well as raise funds for its education and advocacy group with local ties, according to one of the event’s organizers, Jennifer Whelan of Hull.

The first Awareness Day Walk will support the New England PANS/PANDAS Association, a group of parent and medical volunteers who provide education and advocacy about this disease.

PANS and PANDAS occur when misdirected immune responses to infections cause inflammation of the brain, resulting in severe symptoms that can include, but are not limited to, motor and vocal tics, obsessive compulsive disorder, depression, anxiety, rage, and restricted eating. The acronym PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, while PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, a subset of PANS.

“I’m very passionate about this cause,” Whelan – who has a child who suffers from this disorder – told The Hull Times. “It relates to all aspects of life and affects the entire family. It steals kids’ childhoods and can affect their ability to go to school, to socialize, and to just be a kid.”

The walk, which will be held from 9:30 a.m. to noon, starts at the Mary Jeanette Murray Bathhouse. Registration is from 9:30 to 10 a.m., with opening remarks and speakers from 10 to 10:30 a.m. This event is part of a “coast-to-coast effort and beyond” on that date, including similar awareness efforts in Italy and the United Kingdom.

The idea is for participants to walk, bike or run, either from and back to the bathhouse, as part of a group or by themselves, with their family, dogs, friends, or neighbors or as part of a team from wherever they are located, all in the spirit of community and raising funds. The donation is $25 for adults, and children are free.

The organized walk from the bathhouse to the end of Hull Shore Drive (at Phipps Street) and back is about .7 miles. Participants are invited to return to the bathhouse for music, raffle prizes, and refreshments. Information about PANS/PANDAS will be available.

“We’re hoping for a good turnout and good weather,” Whelan said.

She became involved with the association several years ago as a way to connect with other families who have children struggling with PANS/PANDAS in order to help raise awareness and to advocate for legislation mandating insurance coverage for the disease, which passed in January 2021.

PANS/PANDAS can have a life-changing physical, emotional, and financial impact on families, and passage of this legislation ensured that private health insurers cover medically-necessary treatment.

The law included the creation of a PANS/PANDAS Advisory Council and a mandate that insurance companies provide coverage for this disease by January 2022 – a huge victory for advocates, including Whelan.

“It’s amazing that this legislation passed and that an advisory council was formed so that we now have a voice at the State House,” Whelan said.

Both Whelan and one of her friends, Rockland resident Lisa Grisolia, serve on the association’s board, and Grisolia was appointed to the advisory council, which is charged with advising the Department of Public Health commissioner on research, diagnosis, treatment, and education relating to PANS/PANDAS.

Massachusetts was the eighth state in the nation to pass such a law but the only one to establish an advisory council at the same time.

“Hull is an amazing place for this event,” Grisolia, who also has a child diagnosed with the disorder, told The Hull Times. “Our mission is to educate the community, our schools, and anyone else who is interested by raising awareness.

“There’s still a desperate need for people to recognize PANS/PANDAS [in children who are as yet undiagnosed but who suffer from this disorder], for them to get treatment, and [to provide support to other families who are struggling] so they don’t feel really alone,” she said.

Because of a lack of awareness of PANS/PANDAS, many children struggling with this disorder are misdiagnosed and therefore are treated for the symptoms rather than the root cause, which is the infection.

Grisolia noted that any infection, including COVID, can be a trigger for PANS or PANDAS, “which creates even more of a challenge.”

Raising awareness in the schools among educators and teachers can help identify an undiagnosed child who suffers from a PANS or PANDAS disorder and provide support to that child.

“It’s about supporting parents whose children have this disorder and helping to find answers,” Whelan said.

State Reps. Joan Meschino and Josh Cutler and state Sen. Patrick O’Connor have been “very helpful with this effort,” according to Whelan, and have been invited to the upcoming event.

Visit https://go.rallyup.com/nepans/Campaign/Details for further details, to register, or to make a donation to the cause.