Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop

ONCE UPON A GENE - EPISODE 127 Building a Different Kind of Motherhood Experience Than We Had Anticipated with CDKL5 Deficiency Disorder Mom and Founder of Art For Hope Love Cure, Marissa Bishop Marissa Bishop's son Gregory was born with CDKL5 Deficiency Disorder (CDD), a rare neurological disease that causes a variety of symptoms including seizures and cortical visual impairment. Marissa is a board member for the International Foundation for CDKL5 Research (IFCR) and started Art For Hope|Love|Cure to raise money for CDKL5 Deficiency Disorder research. EPISODE HIGHLIGHTS Can you tell us about Gregory? Gregory is almost 6 years old and my only child. He's handsome, laid back and a great snuggler! He lives with CDKL5 Deficiency Disorder (CDD), which is a developmental and epileptic encephalopathy. His brain is missing a protein essential for healthy brain function. Being his mom has challenged me in ways I never could have imagined, but he's a wonderful little boy. How did you connect with the rare disease community and get involved in advocacy? I asked our early intervention provider to help me connect with other moms who had kids that weren't typically developing. CDKL5 has a support group for parents on Facebook and I've been able to find friendships there with other moms who have sons that are Gregory's age.  Can you share about Art For Hope|Love|Cure? Gregory doesn't have a lot of functional finger skills or function vision, so doing toddler crafts wasn't practical, but what worked best to be creative was painting on canvas. I began using Gregory's creations to raise awareness and fundraise for CDKL5. I started Art For Hope|Love|Cure on social media, took the artwork to craft shows which helped me talk to people about CDKL5. The creative endeavor has been fun and has served multiple purposes- giving Gregory and I something special we do together, raise awareness and raise funds. I'm always in search of ways to embrace Gregory's rare disease and bring richness to our lives and this has brought a lot of joy to me. CONNECT WITH MARISSA Art For Hope|Love|Cure Website https://artforhopelovecure.wixsite.com/cdkl5 Instagram @artforhopelovecure https://www.instagram.com/artforhopelovecure/?hl=en Facebook @artforhopelovecure https://www.facebook.com/artforhopelovecure LINKS & RESOURCES MENTIONED CDKL5 Parents Support Group https://www.facebook.com/groups/CDKL5/ International Foundation for CDKL5 Research (IFCR)  https://www.cdkl5.com/ Beyond the Diagnosis https://www.beyondthediagnosis.org/ NORD (National Organization for Rare Disorders) https://rarediseases.org/ ONCE UPON A GENE - EPISODE 056 - Rare Leader Patricia Weltin, CEO, Beyond the Diagnosis https://effieparks.com/podcast/episode-056-patricia-weltin-beyond-the-diagnosis NAC Rare Caregivers Guidebook https://drive.google.com/file/d/1ucr96wjmFGDFYqaKzrlkpDi_SAK4M7lA/view?usp=sharing TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Fecha de Publicación: 24 de marzo de 2022

Duración: 40 min