Winter in Tucson is the ideal time to rally for nonprofits, and pickleball tournaments offer ample opportunity, literally and figuratively.
First up is Eat. Dink. Sleep — A FACES (Families and Children Experiencing Symptoms) of Narcolepsy Fundraiser on Friday, Feb. 6 and Saturday, Feb. 7.
The event features recreational and tournament play and other fun to raise funds to promote awareness about narcolepsy and provide support for children and families dealing with the disorder, which disrupts the brain’s ability to control sleep-wake cycles. The chronic illness can manifest with different symptoms that can be difficult to diagnose; common symptoms can include overwhelming daytime sleepiness, disrupted night sleep, sudden “sleep attacks,” sleep paralysis and more.
“Without the support of these generous folks who want to make a difference in the community about a disorder that is misunderstood and little known, we couldn’t do what we do," said Andee Coppel, co-founder of FACES of Narcolepsy. "Their support is far more profound than they realize. A little bit of giving in a pickleball tournament where they come have some fun goes a long way."
Coppel was inspired to start the nonprofit in 2017 after her daughter, Krista, was diagnosed with narcolepsy at the age of seven.
Coppel emphasized that at that time, narcolepsy was widely believed to affect those in mid-adolescence and older; now it is known to be an autoimmune disorder that can also occur in children and babies.
“We took Krista to her pediatrician clearly knowing something was wrong, but were not sure what to label it," said Coppel. "I have close friends and family that are doctors and narcolepsy came up ... when we asked her pediatrician if it could be narcolepsy, she said, ‘No, that doesn’t happen at this age.’ That is how little was known about it."
She became determined to change that for her daughter and other children and their families.
“Children are growing and developing, not just physically, but in their personalities, socially and emotionally ... all they want to do is to not stand out and they feel like that is all they do," she said. "We were very clear that there was a chasm out there between the reality of pediatric narcolepsy and what was available in support for patients and their families."
FACES of Narcolepsy fills that gap with a variety of support, including informational resources and assistance with care plans and a signature annual “Campference.” The hybrid retreat/conference is open to ages 6 to 21 with narcolepsy and their families. The intent is to provide education and information as well as time for the kids to connect and build community through sharing of their stories, while parents and siblings also have time together.
“Our goal is to come alongside families and, of course, the kids or teens with narcolepsy and be on this wild roller coaster with them," Coppel said. "Having this organization at your disposal doesn’t make it not a roller coaster, but now you have folks alongside you who have ways to help, adjust, cope and make life work better."
Making life better for kids and families on the south side of Tucson is the goal of the Liberty Partnership Kino Neighborhoods Council (LPKNC), a local nonprofit founded by Jamal Givens.
LPKNC was initially established more than 15 years ago as a coalition to help improve the community by combating the use of alcohol, marijuana and prescription drugs in children and youth on the city's south side. It also promotes mental wellness, suicide prevention, and the avoidance of juvenile delinquency. Last year, it reached more than 11,000 youth and 4,000 adults.
“We offer evidence-based programs for programs for youth in grades four through college that focus on substance prevention and mental health," Givens said. "We also focus on resilience and refusal skills so young people can learn to get out of situations .. and empower young people to think about the choices they are making. Life is made of choices and they don’t have to succumb to the negative peer pressures out there."
Additionally, LPKNC educates parents about the harmful effects of substances, including marijuana.
“Marijuana has been legal medically for a while and more recently, recreationally, but especially for young people, marijuana is not OK," Givens said. "Their brains are still developing and the marijuana of today is not the marijuana of yesteryear. The average THC in marijuana used in the 70s and 80s was two to seven percent. Today, it is upwards of 15 to 95%, and you can imagine what that will do to a young person who is using it on a daily basis."
He emphasized that they encourage parents and youth to delay the use of marijuana and alcohol until at least age 21 — and preferably age 25 — to decrease the likelihood of addiction and negative issues related to substance use.
“We say your brain and prefrontal cortex is full developed at about age 25 so you are hard-wired to make better choices. We try to keep young people safe so that they can contribute positively to our society. They have a lot to offer,” said Givens.
Tucsonans can support LPKNC in its mission at the Sonora Behavioral Health Third Annual “Serve for Wellness” Pickleball Tournament at 11 a.m. on Friday, Feb. 27.
