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Once Upon A GeneClaimedEpisodes
Effie Parks
Once Upon A Gene
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Connect with Kara, host of The Special Needs Mom Podcast:Instagram: https://www.instagram.com/thespecialneedsmompodcast/Website: https://www.kararyska.com/Coaching OpportunitiesPathway to Peace {Group Coaching Program}: Schedule a Consult
ONCE UPON A GENE - EPISODE 226From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott CopelandJillian and Scott Copeland are husband and wife, ad
ONCE UPON A GENE - EPISODE 225The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah SiedmanNoah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a de
ONCE UPON A GENE - EPISODE 224The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber FreedAdvocate, rare mom and Founder of SLC6A1 Connect, Amber Freed joins me to talk about ICD-10 codes— the frustrations, th
ONCE UPON A GENE - EPISODE 223Rare Epilepsy Network with Ilene Penn Miller and Christina SanlnocencioIlene Miller and Christina SanInocencio are advocates doing groundbreaking work at the Rare Epilepsy Network (REN), a volunteer network of e
ONCE UPON A GENE - EPISODE 222Krabbe Disease with Kasey FeldtKasey Feldt is the mom of two- one year old Lukas and Dawson, who passed away from Krabbe disease. Kasey has become a passionate and unstoppable advocate, not only advocating for K
ONCE UPON A GENE - EPISODE 221BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFayI'm joined by Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay to discuss BeginNGS, a grou
ONCE UPON A GENE - EPISODE 220A Rare Collection - From Financial Strain to Supportive Gain - A Call For ActionThere's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from th
ONCE UPON A GENE - EPISODE 219Genomics England Clinical Lead for Genetic Counseling - Amanda PichiniAmanda Pichini is a genetic counselor from Genomics England, here to share their initiatives and mission. EPISODE HIGHLIGHTSWhat is your r
ONCE UPON A GENE - EPISODE 218James G Robinson - More Than We Expected Author - Five Years with a Remarkable ChildJames Robinson is a dad and the author of More Than We Expected: Five Years With a Remarkable Child, a deeply moving book and a
ONCE UPON A GENE - EPISODE 184More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie ReadeJanie Reade is an author and mom to three adult sons, one wi
ONCE UPON A GENE - EPISODE 217Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo BichellTerry Jo Bichell is a rare mom, neuroscientist and th
ONCE UPON A GENE - EPISODE 201A Rare Collection - Five Advocacy Aces Share Their Conference CommandmentsEPISODE HIGHLIGHTSMelissa Hioco, STXBP1DO:Offer a family hospitality room where parents can see the broadcast and stay involved in th
ONCE UPON A GENE - EPISODE 216Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt HayMatt Hay has a disorder called Neurofibromatosis type 2 (NF2) and how he has more than o
ONCE UPON A GENE - EPISODE 215Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily CrawfordEmily Crawford left her lifelong dream job of being a teacher to surrender to the demands of
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
ONCE UPON A GENE - EPISODE 214A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne RugariAnne Rugari is an advocating powerhouse, an author of two children's books, a mom, and two of her children have
ONCE UPON A GENE - EPISODE 212Special pop up episode from our friends Daniel DeFabio and Bo Bigelow from the Disorder Channel - Pain Pointshttps://www.rarediseasefilmfestival.com/www.thedisordercollection.comhttps://www.facebook.com/raredi
The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia
ONCE UPON A GENE - EPISODE 211The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike GragliaRare disease parents and front line advocates, Kim Nye and Mike Graglia, join this episode for a discussion abo
ONCE UPON A GENE - EPISODE 210GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul KruszkaIf you're passionate about the evolving landscape of genetic testing, this episode is for you. Gay Grossman, Patient Advocacy & Engagement L
ONCE UPON A GENE - EPISODE 209A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New BabiesI'm joined by two new, rare moms, Emily and Katie, to discuss the topic of having additional children after you've had a child with a rare
Background Music Credits:Title: Sensual FolkAuthor: Scott Holmes https://freemusicarchive.org/music/Scott_Holmes/inspiring-background-musicSource: Free Music Archive https://freemusicarchive.org/music/Scott_Holmes/inspiring-background-music
ONCE UPON A GENE - EPISODE 207Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhDFor Epilepsy Awareness Month, I am joined by Tracy Dixon-Salazar, a rad scientist-mom and patient advocate. Her adult daughter Savannah was diagnose
ONCE UPON A GENE - EPISODE 205Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping-SchuetzLindsey Topping-Schuetz is a parent to seven-year-old Owen, who has cri-du-chat syndrome
The Once Upon a Gene Merch Shop is open for pre-orders through December 6th. Check out the new products added to the shop before it’s too late!Blyth Lord is the Founder of the nonprofit, Courageous Parents Network, an educational platform that
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