More Than – one of Red Ventures’ seven employee resource groups (ERGs) – supports the disabled, neurodivergent, and chronically ill communities, their caretakers and allies. There are many types of disabilities, both seen and unseen, that affect a person’s movement, hearing, mental health, social relationships, vision, learning, limbs, communicating, or overall wellness. The purpose of this group is to increase acceptance – not only awareness – for all disabilities, and empower disabled, neurodivergent, and chronically ill people to advocate for themselves when necessary. We do this by creating opportunities to build community, provide education, enable allyship, and actively advocate for ourselves and each other.
We’re excited to begin this new series, More Than Member Spotlights, to increase acceptance and awareness for some of the many differing health conditions that our employees either live with or support in their everyday lives. This month, we’re talking to Senior Content Designer Philip Palermo, who manages video production for Cord Cutters News at RV. He joined More Than to help spread awareness of rare diseases, as his daughter Amelia has Batten Disease – a genetic disorder that leads to progressive loss of cognitive and physical abilities. Keep reading to learn more about Philip and Amelia.
Q&A with Philip Palermo
What’s your role at RV, and how long have you been with the company?
I’m currently a Senior Content Designer and I manage video production for Cord Cutters News, though I also help out with video projects for TV Guide from time to time. I’ve been with RV ever since the company acquired Soda (Reviews.com) back in October of 2016.
When and why did you join More Than?
I joined More Than as soon as I learned about it. I thought it was a great way to offer a voice to those with disabilities and, in my case, those who are parents and caregivers of those with disabilities. When we learned our daughter, Amelia, might have something called Batten Disease, we had no idea what it was. In fact, our doctors warned us not to Google it (and they were not wrong). But we knew we couldn’t be the only ones who had no idea this group of diseases existed, so I thought More Than could be a good way to spread awareness.
What do you want people to know about Amelia?
Amelia is our miracle of a daughter and she just turned 5. She was diagnosed with the CLN1 type of Batten Disease (Neuronal Ceroid Lipofuscinosis) just after her second birthday. We’ve since learned Batten Disease encompasses a group of more than a dozen genetic disorders. The disease negatively affects how cells dispose of waste materials and leads to a progressive loss of abilities. Amelia has lost her ability to see, walk, and speak over these past few years. She has become severely cognitively impaired and suffers from countless seizures throughout the day. She recently had a gastrostomy tube placed due to swallowing difficulties.
Collectively, these diseases affect an estimated two to four births per 100,000 here in the U.S. The CLN1 type is rarer still and Amelia is, to our knowledge, one of potentially two children in Washington state with this type. Lifespans typically range from 2 to 9 years. While there are new treatments available for other types of Batten Disease, there are currently none available for Amelia’s CLN1, though we remain very hopeful about ongoing research and potential clinical trials.
But Amelia is also far, far more than just her disease and diagnosis. She loves listening to the world around her and perks up when she hears babies playing and crying, classical music, or (oddly enough) the vacuum running. She loves spending time in her inflatable hot tub and listening to the show, “Bluey!”
What else would you like our readers to know about Amelia and your experience caring for a child with a rare disease?
I’d love readers to know that rare diseases are often overlooked when it comes to investing in research for treatments and cures. Companies can opt to pass on research if the resulting treatments benefit such a small group. But we’re so thankful for the firms out there tackling these rare diseases head-on and they could use as much support as possible.
Beyond that, I’d like to commend everyone in the More Than group for doing so much both in and out of the spotlight to care for those they love.
All seven of RV’s ERGs – including More Than – work day-in and day-out to provide welcoming communities for all RVers. To learn more about our ERGs and inclusion efforts, read our DEI Annual Progress Report.