This month’s PLAE ambassadors, Joaquin Zuniga-Perlstein and his father Jeff, are informal ambassadors of the arts in their hometown city of Oakland, too. Joaquin is a middle school visual artist who attends school surrounded by creative classmates and talented teachers all day every day at Oakland School for the Arts (OSA). Jeff owns a local sneaker shop called SoleSpace that by day is a shoe store with access to some of the hottest styles around and by night becomes a venue for all sorts of events, showcasing the work and interests of local artists, designers, and activists.
In April 2015, seven-year-old Clarissa Prado was diagnosed with Wiedemann-Steiner Syndrome (WSS). In June 2017, Clarissa’s mother Catherine joined a Facebook group for the Wiedemann-Steiner Syndrome (WSS) Foundation, and shares that the WSS Foundation’s mission is to serve “as a cornerstone of knowledge for individuals affected by this syndrome, their families, physicians, and researchers. Together, we support and advocate for ongoing research to help those diagnosed to reach their greatest potential.”
When two-year-old Ellie Shamaly was diagnosed with Sanfilippo Syndrome last year, her entire family’s focus changed. Sanfilippo Syndrome is a fatal neurological disease in children that is often referred to as “Childhood Alzheimer’s.” Figuring out how to move forward became an urgent concern, as there is currently no FDA-approved treatment or cure for the condition affecting 1 in 70,000 children.
Darling Quinn Doty is one of approximately 700 individuals worldwide to have been diagnosed with Pitt Hopkins Syndrome (PTHS), a rare neurodevelopmental disorder for which no pharmaceutical treatments are yet available. Enter the Pitt Hopkins Research Foundation (PHRF), which urges, “Don’t just hope for MIRACLES, FIGHT for THEM!” And boy do they walk the walk.
Before he was even born, baby Dean had a perinatal ischemic stroke. When loving parents Lauren and Ryan learned that their as-yet-unborn son had already had a stroke, they were devastated and immediately began learning all they could about his situation. While conducting their research, they discovered the website of non-profit organization Children’s Hemiplegia and Stroke Association (CHASA), an internationally-recognized authority on the needs of children who have hemiplegic cerebral palsy.
One day, Mussia Federman was playing in the park when she saw another girl there who she thought looked lonely. The girl was sitting in a wheelchair and couldn’t play on the swings or go down the slide. Mussia says, “I had so much fun playing store with her. When my mother told me about how important it is to include others, I started thinking about what else I could do.” She began talking to her class at school about the value of including and welcoming all children, and she also began hanging out with the Friendship Circle of Miami Beach and North Dade (FCMiami), a group of like-minded folks whose motto is, “Be a friend.”
We’re willing to bet that you haven’t given much thought to your body’s powerful ion channels lately. Yet, even when you ignore them, they still perform a critical role in your body to keep you functioning and playing the way you do. Sadly, a very rare and as-yet-inexplicable mutation in the SCN8A gene that encodes one of those super-important ion channels can cause us to have seizures, developmental delays, and an overall medically fragile state.
Mighty Matthew Cech is a superhero, who “isn't afraid of anything and never gets tired.” He chooses to face his diagnosis (Mito disease complex l and lll and CIPO) with strength and bravery, just like the masked defenders in our favorite comic books.
But even a superhero needs a sidekick sometimes. Four and a half years ago, Mighty Matthew received his first Binkeez blanket. He declared that the soft bumps sewn into the Binkeez fabric were “magic bumps” and found great comfort in their touch. To this day, Mighty Matthew brings one of his three Binkeez blankets to doctor’s appointments, ER visits, hospital stays, and even into the OR.
Imagine being a new mother. Now imagine being a new mother of twins, both of whom have autism, then founding a non-profit support group for other families of children with autism. Feel tired yet? Fortunately, Nikki Busalacchi, founder of On the Spectrum Autism Support Group, didn’t give in.
When you visit Kids Enjoy Exercise Now, LA (KEEN LA)’s website you’ll see one of the organization’s participants wearing a t-shirt that reads, “The best days are KEEN days.” What are KEEN days? We’re glad you asked. On KEEN days, the non-profit organization Kids Enjoy Exercise Now, LA (KEEN Los Angeles chapter) hosts free events for community members to come together to dance, play, and engage in other fun, physical activities. These days truly are the best days, because the kids typically picked first for teams and those who are often overlooked by their peers show up and play together to their hearts’ content!