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ONCE UPON A GENE - EPISODE 226 From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland Jillian and Scott Copeland are husband and wife, advocates and pioneers who have transformed their personal journey of having a child diagnosed with epilepsy. They have taken off on a quest to create supportive and inclusive environments for kids with disabilities and founded a school, an inclusive living community and the Epilepsies Action Network. They're a force also shaping the policy landscape. EPISODE HIGHLIGHTS Can you first tell us about yourselves and your family? Our journey started about 30 years ago and we've had four sons. Our third son, Nicol, is about to turn 25 years old and when he was 8 months old, he had a prolonged seizure for over two hours and it took us on a different parenting journey than we expected. Since then, we've raised our children together and explored opportunities and possibilities for Nicol, which took us down the path that brings us to today. Our journey with Nicol has given our family a lot of meaning and purpose and it's been an amazing journey. Given that genetic testing hasn't revealed answers for what has caused his epilepsy, how have you managed to navigate the uncertainty and maintained such positivity and strength? Nicol is the lead, the model and we follow his example. Nicol is a wonderful model and he shares a lot of love and joy. He will have a terrible seizure, have to be medicated, feel awful after and wake up the next day with joy. We've had to manage fear and worry, but we take on Nicol's "the sky's the limit" and "can-do" attitude. We don't have the power to control or change a lot, but we do have a choice in how we see it and how we live life. We're both controlling people, but we had to come to terms with what we couldn't control. We'll keep living to the fullest and sharing and feeling love the best we can. Can you tell us about The Diener School? When Nicol was six, he was attending a school that wasn't the best fit for him and we decided to start a school. We found great partners and professionals to help us and we started The Diener School in 2007. The school is a multi-sensory experiential approach with very talented educators, therapists and behavior specialists who work with the kids and with each other. There are elements of the connection of movement and learning, social thinking and other essential curricula and strategies needed for kids who don't learn traditionally and learn through the senses. What is Main Street all about? Main Street is a 70 unit building in Rockville, Maryland where 25% of the units are set aside for individuals with disabilities and 75% of the units are affordable, serving households at 60% or less of the area's median income. On the ground floor, there's a 10,000 square foot community space and it's an inclusive environment open to anybody through membership. It's a place for people to find their happy, to be a part of a community and feel like they belong. What is the Epilepsies Action Network? Epilepsies Action Network brings together a widespread community of epilepsies in one unified voice to lobby the federal government for funds for the epilepsies because it's an under-funded disease, and as a result, there haven't been a lot of treatment advances or breakthroughs. LINKS AND RESOURCES MENTIONED ONCE UPON A GENE - EPISODE 224 - The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed https://effieparks.com/podcast/episode-224-the-complicated-world-of-icd10-codes-with-ceo-and-co-founder-of-slc6a1-connect-amber-freed Epilepsies Action Network https://www.epilepsiesactionnetwork.org/ Rare Epilepsy Network https://www.rareepilepsynetwork.org/ The Diener School https://thedienerschool.org/ Main Street https://mainstreetconnect.org/

ONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia and premature death. He joins me to talk about his sibling experience and dealing with grief. EPISODE HIGHLIGHTS As a sibling under potential pressure to not be a burden, do you still carry those feelings even after Ben's passing? It's hard as a sibling to see everything your parents are facing that's out of your control. As a sibling, there's a need to be on top of your own care and your own emotions. There were no casual complaints in my family growing up. It was either a disaster or business as usual. Filling in that middle space where you have a bad day and want to talk about it didn't exist. We've had to work on that as a family because that's not how we've functioned.  What coping mechanisms help you to write and talk about your experience? I came to the realization that I was going to be emotionally vulnerable, which is uncomfortable. Knowing I would have to talk about my experience and brother, I had to accept it, put it out front, and get really good at talking about it comfortably. I got more comfortable talking about the progression of my brother's disease and my feelings around him, and I used it as a shield.  What would you say to the young person who is living the same life you were living and what questions should people ask that person? The first thing that I would say, and maybe the best thing to ask that person, is about their roles. When do you feel like a sibling? When do you feel like a caregiver? When do you feel like you're an advocate? When do you feel like you are just you? I got stuck in trying to be a lot of those things at once, where the easiest role to ignore was being just me. But everything you push down morphs into something worse. Frustration turns into resentment, fear turns into trepidation, sadness becomes melancholy.  What are the misconceptions people have about death? The biggest problem with grief is that no amount of experience is applicable. It defies the ability to be prepared for it or to use your past to help you cope. I don't think grief gets easier, I think you get better at it. Those that try to give advice to people that are grieving are hanging on to the idea that that time will heal. It's not that your grief goes away, it's that you get better at it. How has your relationship with your sister changed? Ben's death brought us closer and we do a good job of communicating despite handling things differently. There's no right or wrong way to navigate life with a sibling who has a genetic disorder, so we don't judge each other and we're honest with each other.  As a parent, how do you help siblings to have a better experience? Abandon the idea that you owe siblings normalcy. My parents put a lot of effort into delivering normal childhood experiences. Instead, put that energy into helping your children articulate what they want. More important than chasing normal is helping siblings decide what's important to them and how to pursue it. LINKS & RESOURCES MENTIONED ONCE UPON A GENE - Episode 109 - A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins https://effieparks.com/podcast/episode-109-what-i-know-for-sure 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/

ONCE UPON A GENE - EPISODE 224 The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed Advocate, rare mom and Founder of SLC6A1 Connect, Amber Freed joins me to talk about ICD-10 codes— the frustrations, the battles, and the common-sense changes we're fighting for in the rare disease community that are pivotal to research, recognition and treatment of so many rare diseases.  EPISODE HIGHLIGHTS What are ICD-10 codes? In 1999, the ICD-10 code was developed by the World Health Organization and it was used to track mortality coding from death certificates. It was the way people were tracked when they died, but it also became the way people were diagnosed and treated for conditions. Today, they drive so much in clinical medicine. When you go to the doctor, they will input a code of the flu, strep throat, or whatever ailment you're affected by. In a practical sense, it is how the doctor bills insurance.  How do misused ICD-10 codes affect our kids? They are the bones of our healthcare system and it impacts rare disease because when we go to the doctor and describe our children's symptoms, we need a code to represent diseases so we can be recognized as a legitimate disease and population and so that patients can be tracked in our healthcare system.  What does an organization need to know and what is the process for applying for an ICD-10 code? There are two chances per year to obtain an ICD-10 code. You submit a formal application and if you're selected, you can present before a committee and then it'll be a year to be issued a code. The application is pretty straightforward, with a scientific component and a clinical component. With a medical board of advisors, it's not hard to complete the application and gather materials.  How can we as a rare disease community fight to help make changes around ICD-10 code use and issuing.  As a community, we need to get the Rare Disease Legislative Caucus involved, get the White House involved, talk to our senators and congressmen. We need to all apply for ICD-10 codes and get loud, tweet about it, talk about it, get noticed.  LINKS AND RESOURCES MENTIONED ICD-10 Code PAG Action Plan Combined Brain https://combinedbrain.org/ EveryLife https://everylife.com/ NORD https://rarediseases.org/ Global Genes https://globalgenes.org/ SLC6A1 Connect https://slc6a1connect.org/ Email Amber afreed@SLC6A1Connect.org  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/

ONCE UPON A GENE - EPISODE 223 Rare Epilepsy Network with Ilene Penn Miller and Christina Sanlnocencio Ilene Miller and Christina SanInocencio are advocates doing groundbreaking work at the Rare Epilepsy Network (REN), a volunteer network of epilepsy organizations banding together, sharing research efforts, and improving the lives of rare epilepsy patients and families. They're here to share about the inception and mission of REN and the resources available through membership. EPISODE HIGHLIGHTS What gap did establishing REN fill? REN was born out of the need for smaller organizations to have more information about constituents and their experiences and not being able to secure the funds to do that for themselves. Ten rare epilepsy organizations came together and were awarded funding to create the first rare epilepsy network registry that had the capacity to collect information across all rare epilepsies. How do you engage, continue to grow and support your community? We host monthly meetings and we bring in researchers, partners, speakers and other organizations to bring information to our members that they can use. Most recently we had panelists come in to talk about mortality, which is a hard topic to discuss, but our members are dealing with this in their own communities. The panel shared resources and best practices and we're assembling a collaborative working group to continue making these resources available to the network. We also have a list serve which includes all REN members where anyone can ask questions. The discussions that happen as a result are so valuable and helpful. We have a referral network so we can refer researchers, academics, clinicians and other industry professionals to the organizational partners, support groups and patient organizations they can engage in. We stay connected with these communities so we can connect the dots and match-make and help everyone find their tribe. Our monthly newsletter includes all the latest REN news, we share resources, highlight organizations and organization leaders. What are the future goals for REN? We pulse our members to see what's most important to them and two years ago, we focused on multi-disciplinary clinics because we heard from members that there aren't enough of them. We took a deep-dive into multi-disciplinary clinics and organized meetings at the Annual American Epilepsy Society Conference to bring together 100 researchers, clinicians and patient-advisory group leaders to work on the challenge. This year we're working on clustering to determine where there's synergy between epilepsy commonalities.  Why should a patient organization or support group join REN? There's no cost to be a REN member and you can engage at a pace that works for you, whether you serve on a committee and be active in work groups, or you can just watch, learn and share information as it's appropriate.  What resources do you wish current REN members better utilized? For current members, I'd like to see more engagement on social media using the hashtag #rareepilepsies in all posts. If any syndrome or disorder has epilepsy as a symptoms, using the hashtag #rareepilepsies can help build public and professional awareness. Our monthly member meetings are very actively engaged with 50+ organization leaders attending and sharing insights, so if you aren't coming to those meetings, you're missing out.  LINKS AND RESOURCES MENTIONED ONCE UPON A GENE - EPISODE 207 - Breaking Barriers in Brain Health with Tracy Dixon-Salazar, PhD https://effieparks.com/podcast/episode-207-breaking-barriers-in-brain-health-with-tracy-dixon-salazar-phd LGS Foundation https://www.lgsfoundation.org/ Hope for Hypothalamic Hamartomas https://www.hopeforhh.org/ American Epilepsy Society https://aesnet.org/ Epilepsy Foundation  https://www.epilepsy.com/ Undiagnosed Disease Network  https://undiagnosed.hms.harvard.edu/ Courageous Parents Network https://courageousparentsnetwork.org/

ONCE UPON A GENE - EPISODE 222 Krabbe Disease with Kasey Feldt Kasey 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 Krabbe disease, but also the newborn screening system so kids have a better chance at early detection.   EPISODE HIGHLIGHTS Can you tell us about yourself and your rare disease journey? My son Dawson was diagnosed with Krabbe disease. He was born a healthy baby boy and at about three months old, my husband and I noticed symptoms such as lack of head control, eating difficulties and irritability. We began testing and at about six months old, we received a diagnosis of Krabbe disease, a terminal diagnosis. We kept Dawson comfortable for about eight months following his diagnosis and he passed away at fifteen months old.  What is your advice for someone interested in policy advocacy? Search and find out who your local lawmakers are, especially your Delegate. The EveryLife Foundation is a good source for information on policy advocacy and can help you to be successful. Also, gather your disease community because the more the merrier.  How has advocating for Krabbe disease and newborn screening impacted you? It became my passion to advocate for Krabbe disease, but also rare disease in general. When Dawson passed, I knew I wanted to do this work as a career. I started working for Sisters' Hope Foundation and it's been an amazing experience and honor to Dawson.  LINKS AND RESOURCES MENTIONED ONCE UPON A GENE - EPISODE 214 - A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari https://effieparks.com/podcast/episode-214-the-power-of-brain-and-tissue-donation-in-rare-disease-research ONCE UPON A GENE - Episode 111 - The Importance of Newborn Screening in Every State with ALD Alliance Founder Elisa Seeger https://effieparks.com/podcast/episode-111-elisa-seeger-ald-alliance ONCE UPON A GENE - Episode 128 - Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing https://effieparks.com/podcast/episode-128-heidi-edwards EveryLife Foundation https://everylifefoundation.org/ KrabbeConnect https://krabbeconnect.org/ Hunter's Hope https://www.huntershope.org/ Krabbe Families Facebook Group https://www.facebook.com/groups/krabbefamilies/ Librarey https://www.librarey.com/ Sisters' Hope Foundation https://sistershopefoundation.org/ World Orphan Drug 2024 https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/ GeneDX https://www.genedx.com/ Beyond The Diagnosis https://www.beyondthediagnosis.org/ 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/

ONCE UPON A GENE - EPISODE 221 BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay I'm joined by Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay to discuss BeginNGS, a ground-breaking initiative that stands at the forefront of genetic sequencing and rare disease diagnosis.  EPISODE HIGHLIGHTS What led to the creation of BeginNGS? Rare genetic diseases are an immense health ecosystem challenge- receiving a timely diagnosis. On average, it takes 4.8 years to diagnose a child with a genetic disease, and meanwhile, symptoms continue to worsen and the disease progresses. The goal of BeginNGS is to prevent or reduce the impact on children with rare genetic diseases, minimizing suffering, cost and delay of diagnosis.  Why is BeginNGS an important initiative to support? Anyone connected to the rare disease community shares the same vision for a world where every rare disease patient receives the right effective treatment at the right time. That starts with changing the diagnostic odyssey and ensuring early, fast diagnosis. What is the mission of the BeginNGS Consortium? The BeginNGS Consortium is a partnership of pharmaceutical and biotech companies, sharing a vision of the right effective treatment at the right time. Our vision is ultimately to ensure every baby born in the United States has the opportunity to be screened for rare disorders. What differentiates this program and the consortium is that the patient communities have been represented from the beginning and the patient population communities has been impressive. Some of our working groups are led by members of the patient community to make sure that what's delivered is valuable to the patients.  What are the major pain points to leveraging newborn screening for preventable disorders and broad use of rapid diagnostic genome sequencing? Pediatricians rarely order genome sequencing. We estimate only 2% of children who need the testing get it. Additionally, even when testing is ordered, it doesn't always translate into optimal treatments and there can still be delays in life-saving treatments.  What does the future look like for BeginNGS? The BeginNGS Consortium is comprised of rare disease advocacy organizations, parent support groups, healthcare systems, policy makers, experts in academic medicine, biotech companies developing new genome sequencing methods and pharmaceutical companies developing new treatments for rare genetic diseases. We hope to increase the size of the consortium so we can grow the organization and capture every voice and represent every genetic disease. Another strong aspiration is to raise grant support and funding to complete and deploy our pivotal clinical trial.  LINKS AND RESOURCES MENTIONED BeginNGS https://radygenomics.org/begin-ngs-newborn-sequencing/ Alexion https://alexion.com/ ONCE UPON A GENE - EPISODE 213 - Finding Strength In Every Step https://effieparks.com/podcast/episode-213-finding-strength-in-every-step Frontiers 2024 Conference https://radygenomics.org/frontiers-conference/ 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/

ONCE UPON A GENE - EPISODE 220 A Rare Collection - From Financial Strain to Supportive Gain - A Call For Action There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme.  EPISODE HIGHLIGHTS Katie Scheid The beginning of my care-giving journey was filled with trauma, disbelief and a complete re-shaping of the life I knew. My daughter Millie is three and a half years old and I am her full-time, unpaid caregiver. She suffered a severe stroke just before she was born, resulting in complete care for the rest of her life. She is blind, can't sit or hold her head up, can't speak or control her body's movements. She's tube-fed and has over 50 seizures each day. In Washington, kids like Millie, whose needs qualify for in-home care, can have any person be their hired care-giver, except a parent. Millie was assessed and allocated for 185 hours per month of paid, in-home care-giving to alleviate the burden on us as her primary care-givers. After 6 months, we didn't receive a single applicant. I quit my job to be her care-giver and we've struggled to live on one income since. Parents Empowering Parents of Washington (PEPWA) is a group of over 550 advocate members working to change the laws in Washington. We are leading the fight to access the service our kids qualify for and we demand better for ourselves and our kids. Lindsey Topping-Schuetz On January 10th, I testified before the Washington State House Committee on Human Services, Youth and Early Learning in favor of HB2184. This legislation would authorize payment of parental care-givers of minor children with developmental disabilities. January 10th is a significant day for my family. Seven years ago, my husband and I would leave the hospital for the first time with our son, Owen. He spent 103 days in the NICU. We walked down the hallway lined with staff and family, everyone clapping and cheering. Owen came home dependent on oxygen and a feeding tube. He would have dozens of episodes a day that left him struggling to breathe. At three years old, Owen was granted hours to pay someone other than my husband or I to care for him. It's nearly impossible to utilize these hours because there's a shortage of nurses and they're not provided with the medical training required to care for my son. Care-giving a child like Owen goes well beyond parenting. The financial hardship has burdened our entire extended family. HB2184 has the ability to change the lives of families like mine. It is time for Washington to acknowledge the work of parent care-givers in the same way as all other care-givers. Emily Holloway I'm the mom of four children and I live in Virginia. Our daughter Chloe was diagnosed with a rare disease of her lymphatic system. While her life was seemingly normal for the first eight years, we drove head first into the medical world when she began showing signs of the disease. Working full time wasn't realistic, so I left my teaching career and our family income was cut in half. Chloe receives g-tube feedings and several medications, she needs assistance bathing and walking, she attends weekly therapy sessions and she requires a lot of care. I was given the opportunity to become her paid care-giver and I was thrilled to be home caring for Chloe, contributing to our finances, an opportunity that ended when the pandemic and medical lockdown concluded. Medicaid believes care-takers now need to head back to work and hire care-takers for their children. Additionally, there's a maximum amount of care hours a child can receive, regardless of their needs. The best interest of children is missing from these regulations. We hope our legislators will allow the parents who know their children best, love them the most and are the biggest advocates for their well-being, to remain their care-takers and receive a small reimbursement to help pay living expenses.

ONCE UPON A GENE - EPISODE 219 Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini Amanda Pichini is a genetic counselor from Genomics England, here to share their initiatives and mission.  EPISODE HIGHLIGHTS What is your role at Genomics England and how did your career develop? I work at Genomics England as the Director of Clinical Implementation and I'm responsible for the strategic clinical leadership for our products and services, ensuring research, diagnostics and clinical programs we support are in line with the latest healthcare standards and research. Prior to joining Genomics England, I worked as a genetic counselor, a profession I was interested in for a long time. When I started studying biology, I was keen to do something that allowed me to communicate and speak to people, but still be immersed in science. While my role isn't patient-facing now, I bring my genetic counselor skills to understand the complexities of genetics in healthcare and how we communicate to various audiences to design and deliver our programs. What are the current initiatives at Genomics England? Since the 100,000 Genomes Project, we are focused on working with the NHS to provide genome sequencing as a standard clinical test. We've worked hard to ensure healthcare professionals understand how to help families through the process, manage their expectations and potential results of genome sequencing. We're also focused on looking at different types of sequencing technology we can use to enhance the testing and care for cancer patients, and also a newborn genomes program which is part of a large-scale national research study called the Generation Study. This study will sequence the genomes of 100,000 newborn babies with a goal of understanding if sequencing in the newborn period can help identify rare conditions earlier in life, with the ideal goal of improving the quality of life and outcomes for the babies identified as having a rare condition. Can you talk more about the newborn screening? Like in the US, we do a heel prick when a baby is about 5 days old at the parent's discretion. We recommend it as public health and to look for rare conditions that could be treated if found early. We currently test for 9 conditions, but the Generation Study is an optional screening in addition to standard newborn screening. It will be available to parents at different hospital sites, a baby doesn't already need to be ill and parents don't have to have a known history to participate. At birth, a small amount of cord blood will be taken and that sample used to carry out genome sequencing and to look for around 200 rare conditions that we feel would have an early intervention option if found through screening. We will follow up on every test, with much closer monitoring and follow-up where a condition may be positive. LINKS AND RESOURCES MENTIONED Genomics England https://www.genomicsengland.co.uk/ Genetic Alliance UK https://geneticalliance.org.uk/ Genetic Alliance US https://geneticalliance.org/ 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/

ONCE UPON A GENE - EPISODE 218 James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child James Robinson is a dad and the author of More Than We Expected: Five Years With a Remarkable Child, a deeply moving book and a testament to the strength found in vulnerability, the importance of community and the boundless love that families share in the face of adversity.  EPISODE HIGHLIGHTS Can you tell us about your family and what inspired your book? My wife and I have three sons, one who was a twin born with a congenital heart defect called heterotaxy that died at age 5. My book is a memoir, a story of our years together and why it was such a privilege to be Nadav's father. How did writing your book impact your healing process? When Nadav died, I felt a tug to write about his life. Right after he died, we took a roadtrip across the US, just to feel the relief of the open road. I first wrote an essay about the trip, Road to Recovery, that was published in The New York Times and a lot of people wrote in to talk about how they had gone through similar experiences. I realized that sharing our story was valuable to others. I started writing on topics we had been through to get things out of my brain— faith, anatomy, food, music. Getting things on paper was a relief, but I also wanted to leave things written on paper for his brothers so they knew what we went through and how I dealt with it. In many ways, the story is about how I found the strength to tell his brothers that he died. What is your advice for other parents who are in a position of making tough medical decisions for their children? There's a lot of ambiguity in medicine and that informed much of my decision making because I came to learn to educate myself the best I could, but then ultimately go with my gut.  How did your family's faith influence decisions you made for Nadav? Faith was complicated for us, not that we doubted our faith, but our eyes were opened to what faith really is. There is something about faith that brings people together and I think that's the best aspect of faith— the importance of connection and strength in troubling times when and where you may not expect. After a surgery, we learned Nadav wasn't doing well and that he would either stabilize or deteriorate over night. Despite the news, my wife pointed out that it was up to Nadav and that she could live with whatever he decided because she trusted him. That was a statement of faith more profound than I've ever experienced. It wasn't hope, it was faith, and that was powerful for me and the faith that carried me through a lot of times of uncertainty.  LINKS AND RESOURCES MENTIONED More Than a Memoir Website https://morethanamemoir.com/ More Than We Expected: Five Years With a Remarkable Child https://www.amazon.com/More-Than-We-Expected-Remarkable/dp/1637588224 Road to Recovery https://www.nytimes.com/2017/12/07/travel/road-trip-family-grief.html More Than We Expected: A Conversation with Father and Author James Robinson https://courageousparentsnetwork.org/events/more-than-we-expected-a-conversation-with-father-and-author-james-robinson 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/

ONCE UPON A GENE - EPISODE 184 More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade Janie Reade is an author and mom to three adult sons, one with a severe neurodevelopmental disorder caused by a mutation in the SYNGAP1 gene. We'll talk about her unique perspective as a parent and also about her book, More of Everything: How I Became a Better Parent to My Child with Extreme Special Needs by Lifting My Emotional Burdens. EPISODE HIGHLIGHTS Tell us about yourself and your family. I am married with three adult sons. Joey is our second child and he lives in a group home. When he was younger, he wasn't developing as he should and started biting his hand. When he was little, he wasn't hurting himself, but as he aged stress made biting worse and there was little I could do to help. After he went to a group home, he stopped biting a couple days later.  Can you talk about your book? The goal of the book was to show who I am and how I think. The first portion of the book is a series of vignettes starting at age four, going through age 21. At the end of each is a looking back section where I summarize about that time and a lesson section about my takeaways. I also talk later in the book about acceptance and frustration. Finally, I talk about parent coaching, which is what I do. Growing up with Joey, did either of your other two sons grow up and go into a compassionate-led career? No, but they're both very compassionate and emotionally-aware people. My oldest son volunteered as a peer counselor when he was in high school. It was a way for him to talk to people and help them through problems. He has a very emotionally deep soul. My youngest son has always been very inclusive and a connector of people. After Joey moved and I was very sad, my oldest son told me that our family was a group project and that, just like in a group project, we had to do what was best for everyone. How did you find community support and what did it change for you? I tried support groups and they weren't a good fit due to the severe intellectual disability my son has. When he was younger, I was told he would catch up, so I didn't fit in an intellectual disability group either. I didn't find people for a long time.  LINKS & RESOURCES MENTIONED The Two Disabled Dudes Podcast - Episode 215 – Birthday Parties Can Be Tough https://twodisableddudes.com/215-birthday-parties-can-be-tough-with-guest-host-effie-parks/ The Disorder Channel https://www.thedisordercollection.com/ Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life https://www.amazon.com/Emotional-Agility-Unstuck-Embrace-Change/dp/1592409490 More of Everything: How I Became a Better Parent to My Child with Extreme Special Needs by Lifting My Emotional Burdens https://www.amazon.com/More-Everything-extreme-special-emotional-ebook/dp/B0BQ2C7HNL Janie Reade Website https://janiereade.com/ 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/ Interested in advertising on Once Upon a Gene? Email advertising@bloodstreammedia.com for more information!

ONCE UPON A GENE - EPISODE 217 Uniting Science and Hope - COMBINEDBrain and its Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell Terry Jo Bichell is a rare mom, neuroscientist and the founder of COMBINEDBrain, a nonprofit organization revolutionizing the approach to clinical treatments for rare genetic neurodevelopmental disorders by pooling efforts, studies and data.  EPISODE HIGHLIGHTS Can you share a little bit about yourself and how you came into the rare disease space? I am a mom of five grown kids and my youngest is 24 years old and has a diagnosis of Angelman syndrome. With that, everything that was interesting to me wasn't interesting anymore and I turned my attention to neurological, genetic and developmental things. I worked as a nurse and midwife before my youngest son was born and I took a particular interest in research. Research felt like it was taking forever and I had the innocent notion that I could push things faster if I only had the right science degree, so I went back to school and got a PhD in molecular neuroscience. What inspired you to form your organization, COMBINEDBrain? While I was working on my PhD, scientists figured out treatments for Angelman syndrome and a way to measure if the compounds were working was needed. I was drafted to work on the Angelman Biomarkers and Outcome Measures Alliance (A-BOM) and learned I could take what  I knew about Angelman and apply it to a lot of other similar disorders. I started COMBINEDBrain to take the lessons from A-BOM and expand it to as many other disorders as possible.  What are COMBINEDBrain's key services and programs? The biorepository has over 900 individuals represented and we collect all samples to be used for biomarker studies for use in stem cells. We have a COMBINEDBrain registry that any disorder member can use for free and transfer data into their own portal. Project FIND-OUT has a goal of facilitating early diagnosis of rare genetic neurodevelopmental disorders in infants based on 7 symptom categories. In the future, we'll also expand this offering to adults.  Can you tell us about the COMBINEDBrain Roadshow? Many of our participating member organizations are having conferences this year across the country. We have asked each organization to open their conference to other member organizations so we can collect COMBINEDBrain member samples at those sites. This allows us to meet local families and opens up an opportunity to stop by the conference and submit their donation. We can also send a mobile phlebotomist to patient homes to collect and submit samples.  LINKS AND RESOURCES MENTIONED COMBINEDBrain https://combinedbrain.org/ Angelman Syndrome Foundation https://www.angelman.org/ The Foundation for Angelman Syndrome Therapeutics https://cureangelman.org/ Simons Searchlight https://www.simonssearchlight.org/ Rare-X https://rare-x.org/ Probably Genetic https://www.probablygenetic.com/ AmbitCare https://ambitcare.com/geneticseizures/ Project FIND-OUT https://projectfindout.org/ 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/

ONCE UPON A GENE - EPISODE 201 A Rare Collection - Five Advocacy Aces Share Their Conference Commandments EPISODE HIGHLIGHTS Melissa Hioco, STXBP1 DO: Offer a family hospitality room where parents can see the broadcast and stay involved in the conference. Provide sibling spaces and make them feel special.  Spend the extra money to provide a buffet dinner and a kid's buffet with kid-friendly food. Ask for discounts on everything. Find a local AV company who will work within your budget. Create sponsorship tiers and ask for sponsorship. Provided one-on-one genetic counseling to families at no cost. Provide social opportunities for families to connect with researchers.  Utilize an event center with a hotel for accessibility.  Research if a city or state has incentives available when holding events there. DON’T: Offer childcare because it's a liability. Provide a plated dinner because it's logistically complex. Accept the initial quote you're provided without trying to negotiate costs. Use the hotel's AV company because the cost will be higher. Trish Flanagan, HNRNPH2 DO: Invite not just impacted families to your event, but also the researchers carrying out studies about your rare disease.  Poll your community about event location, dates that work best, and discussion topics.  Provide speakers with plenty of notice when inviting them to a conference.  Make sure your event space adequately supports the patient and families' needs. Be transparent about the cost, inclusions and exclusions of the event.  DON’T: Don't leave the research team to organize and schedule patient assessments without your input.  Don't overlook having an interpreter and special equipment that may be needed. Amy Fenton Parker, BDSRA  DO: If your budget allows, utilize a professional conference planning team. Include a family reunion reception or party so families can reconnect. Schedule separate break-out sessions for moms, dads, siblings, and other caregivers. Use a technology provider who will make suggestions for the best outcomes and to make your conference dynamic. Explore pre-recorded sessions and livestreams. Offer a breakfast buffet so guests start their day off right. Provide trained professionals for childcare and make parents aware of the offering. Take advantage of area professionals who can offer services at the conference. Create a planning committee to brainstorm ideas and help on the day of the event. Utilize your board to assist with speakers Kara Kilroy, JdVS DO: Make space for families to connect and share.  Manage volunteers well, meeting with them in advance to communicate plans and coordination. Spend money on AV to ensure you have the right set-up in-person and also capture recordings and/or livestreams. Sit with families and take everything in, enjoying the moment and appreciating all your hard work.  Have a planning committee. DON’T: Don't expect perfection and be ready to roll with changes and pivot. If you provide childcare, ensure you have options for different age groups and different needs so parents get the most out of their attendance.  Ashley Point, KdVS DO: Recruit volunteers. Find a host family in the local area to accept shipments, recommend local services and companies and connect you with volunteers. Work with an event site company who understands your needs and who can negotiate costs on your behalf.  Fundraise, fundraise, fundraise. Ask, ask, ask. Set a budget early, but stay flexible. Set a rough agenda based on what's important to your community. Be sure to allow for time for families to gather together and add breaks during the event.  LINKS AND RESOURCES MENTIONED STXBP1 HNRNPH2 BDSRA JdVS KdVS ONCE UPON A GENE - EPISODE 200 - Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens

ONCE UPON A GENE - EPISODE 216 Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay Matt Hay has a disorder called Neurofibromatosis type 2 (NF2) and how he has more than overcome the challenges that came with it— he has thrived because of it. He is the author of a new book, Soundtrack of Silence: Love, Loss, and a Playlist for Life.  EPISODE HIGHLIGHTS Can you talk about the inspiration for your book? NF2 causes tumors to grow on nerves and I have benign tumors on my hearing nerves. So while my ears work, the nerve that connects my hearing and my brain has been damaged and I'm deaf as a result. I felt a responsibility to put into words what I've been through because I once felt like I didn't have anyone to turn to.  Can you tell us about the soundtrack and collecting the songs on the playlist? When I came face-to-face with losing my hearing, I knew I wanted to hold on to music and the memories associated with specific songs. The soundtrack is a collection of songs associated with my experiences with rare disease. I started listening to songs with intention and considered the songs I wanted stuck in my head for the rest of my life, the ones I wanted to reflect back on in sorrow and joy.  Can you talk about your mindset to thrive? I spent a lot of time when I was younger, pretending my NF2 challenges didn't exist, hiding symptoms from others, putting so much energy into trying to exist as a person in spite of my disease. I realized later that through my challenges, I had learned to be a better listener because of my hearing loss. I became more empathetic because I have experienced in my own life that it doesn't matter how hard you try, some things are out of reach. I wouldn't have developed these skills without having NF2 and I'm proud of how it has shaped me and what I've learned from it.  What is your advice for others who want to tell their story? Having spent a lot of time advocating for myself and others, I notice this belief that someone has to be a polished speaker to tell their story. When it comes to sharing your story about rare disease, the more real and authentic, the more impactful. Your story is absolutely worth telling. And sometimes if you don't feel capable, just existing is enough.  LINKS AND RESOURCES MENTIONED Soundtrack of Silence: Love, Loss, and a Playlist for Life https://bookshop.org/p/books/soundtrack-of-silence-matt-hay/19995432?ean=9781250280220 Soundtrack of Silence on Spotify https://open.spotify.com/playlist/1GCTtdXb5zzJO0OMMZbcfv?si=0a9c377b237d4675 ONCE UPON A GENE - EPISODE 214 - A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari https://effieparks.com/podcast/episode-214-the-power-of-brain-and-tissue-donation-in-rare-disease-research ONCE UPON A GENE - EPISODE 215 - Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford https://effieparks.com/podcast/episode-215-beyond-the-crossroads ONCE UPON A GENE - EPISODE 209 - A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies https://effieparks.com/podcast/episode-209-a-leap-of-faith Matt Hay on Instagram https://www.instagram.com/hearmatthay/ 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/

ONCE UPON A GENE - EPISODE 215 Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford Emily Crawford left her lifelong dream job of being a teacher to surrender to the demands of care-giving. She joins me to discuss identity loss and metamorphosis after becoming a parent to a medically complex child.  EPISODE HIGHLIGHTS Can you tell us about your family? I have four children— Chloe is my middle child. The first eight years of Chloe's life was seemingly normal and she hit all the expected milestones. At eight years old she started presenting unique symptoms and she was eventually diagnosed with a rare, life-threatening illness of her lymphatic system, called central conducting lymphatic anomaly (CCLA).  How has Chloe's diagnosis affected your career and how did the shift affect your sense of personal identity? I wanted to be a teacher my whole life. Right before Chloe was diagnosed, I was at the pinnacle of my career, being recognized as teacher of the year, presenting at teaching conferences and I loved living my passion. Immersed very quickly and suddenly into the medical parenting world, I had to give up my career teaching. It's a personal struggle not to be teaching and the shift has been difficult. The shift was dark and isolating and I felt like I didn't have anything to contribute to the conversations with teacher friends. I wasn't connected to anyone else around me and I also experienced jealousy in my marriage because my partner was still able to work.  How have you adapted to your new role? The biggest part of my journey has been to take part in mental health therapy, which has been really helpful for me. I get to the gym every day and I am part of the OUAG walk group. I look for pockets of time where I can do things for myself, like walking the parking lot when my daughter is in therapy sessions. I have leaned into my network of friends who have put in the time to learn about what I'm going through and I make time to have dinner or to see a movie with them. My children are my #1 priority, but I am Emily and I stay connected to myself the best I can.  Can you share about your recognition as a CPN Parent Champion? I found CPN when I was researching pediatric palliative care and I knew my teaching skills would lend well to the Parent Champion opportunity. That role has led me to my people. We're all doing big things, parenting, doing the hard stuff and we can relate well to each other.  LINKS AND RESOURCES MENTIONED Walking Club Facebook Group https://www.facebook.com/onceuponagene.podcast/ Courageous Parents Network https://courageousparentsnetwork.org/ 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/

ONCE UPON A GENE - EPISODE 214 A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari Anne Rugari is an advocating powerhouse, an author of two children's books, a mom, and two of her children have passed away from Krabbe disease. She joins us to share her personal story and also share her knowledge about tissue and organ donation. EPISODE HIGHLIGHTS Can you share how you became part of the rare disease world? In 1986, my second child Nick received a diagnosis of Krabbe disease, or globoid cell leukodystrophy, a terminal disease that took him just after his first birthday. I also had a three year old son who was unaffected and we decided we probably wouldn't have another child with a rare disease if we wanted more children. In 1999, my daughter Gina was born and tested for Krabbe disease, confident the odds were with us. Unfortunately, she tested positive. As a result of an umbilical cord blood transplant she had at three weeks old, she did remarkably well and lived to fifteen years old.  What were your considerations when deciding to donate Gina's brain for research? It's an emotional, practical and religious decision. There are so many factors that play into the decision. For me personally, I wanted to make sure I was making a sound decision morally and spiritually. I felt we weren't going to learn more about the disease unless there were human tissues and samples to study. It was a decision I felt strongly about to help others. There's a source of comfort knowing that the tissues donated are being used to move research forward.  Why is it important to consider and arrange tissue donation in advance? It's emotional and you don't want to be making those decisions at a time when you've lost them. There's also some coordination that needs to be planned, ensuring there's a pathologist available at the hospital for the retrieval. Planning in advance allows you time to coordinate the details, like if passing takes place at home instead of the hospital, and notifying the funeral home so they can coordinate with the pathologist. Getting the logistics organized in advance makes the transition when someone passes away easier. Discuss plans in advance with your care team so they can help with arrangements and support you.  LINKS AND RESOURCES MENTIONED ONCE UPON A GENE - EPISODE 213 - Finding Strength In Every Step https://effieparks.com/podcast/episode-213-finding-strength-in-every-step ONCE UPON A GENE - EPISODE 198 - Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody https://effieparks.com/podcast/episode-198-advocating-with-heart Courageous Parents Network  https://courageousparentsnetwork.org/ Anne Rugari Website https://www.annerugari.com/ Just Like Me!: A Book About A Girl with a Rare Disease https://www.amazon.com/Just-Like-Me-about-Disease/dp/0982218710 Just Like Me Too! https://www.amazon.com/Just-Like-Too-Anne-Rugari/dp/1970063378 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/

Episode description not available.

ONCE UPON A GENE - EPISODE 212 Special pop up episode from our friends Daniel DeFabio and Bo Bigelow from the Disorder Channel - Pain Points https://www.rarediseasefilmfestival.com/ www.thedisordercollection.com https://www.facebook.com/rarediseasefilmfestival https://www.instagram.com/disorderrarediseasefilms/ https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/ DISORDER: The Rare Disease Film Festival

ONCE UPON A GENE - EPISODE 211 The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia Rare disease parents and front line advocates, Kim Nye and Mike Graglia, join this episode for a discussion about the unseen struggles of rare disease parenthood and the delicate balance of operating an advocacy organization. EPISODE HIGHLIGHTS Kim, can you share your perspective on how much work it is to lead an advocacy organization and the impact it has on balancing your role as a parent? At first, it seemed like something to do on the side, not a job or career, but a calling or a passion project. With so much emotion and heart behind it, it was easy to fool myself into doing the work a few hours a week, but it's actually running a small business. It very quickly became a full time job that really seeped into every moment of the day. Because there's so much passion driving it, I willingly do it by day and on the weekends. There's a level of guilt wondering if you're handling your home front well enough while fighting the battle for your community. Mike, can you share your perspective on how much work it is to lead an advocacy organization and the impact it has on balancing your role as a parent? In a single morning, I can go from a call with an investor in the morning, to a lab who needs money to keep working, to a mom who has just received a diagnosis, to a board member who wants to know why a project isn't done yet, to my own child who is screaming out for my attention. There are moments I wonder if I'm doing what's best for my child, going from a heavy intellectual endeavor to a moment where I question if I'm a good enough parent or spouse. The struggle is intense sometimes and there are days where your resources run low. What key lessons have you learned along your journey and what advice do you have for others? For new families, don't reinvent the wheel where you don't have to. Look for opportunities to collaborate with other groups. Think long term because your mindset when you receive a diagnosis and you're panicking is very different from reality of what's ahead. How do you anticipate rare disease evolving from your contributions? As frustrating as it is not having treatments for our children and communities, I think we are making progress and I can see the return on investment in terms of getting funding and watching the research grow. Progress is never fast enough for affected families, but we will see improvements and treatment options. What is your advice for other foundation leaders and advocates who are trying to find balance in their dual role? You'll be exhausted and have down moments, but then you're also going to meet the best people and rally and do great things. Protect your time and focus on what really matters, including your own family and your health. The work of the foundation will evolve and you're in this for life, so get out of panic mode and plan your time accordingly. LINKS AND RESOURCES MENTIONED Tess Research Foundation https://www.tessresearch.org/ SynGAP Research Fund https://curesyngap1.org/ ONCE UPON A GENE - EPISODE 041 - Time is Brain: SYNGAP Research Fund with Mike Graglia https://effieparks.com/podcast/episode-41-syngap-research-fund ONCE UPON A GENE - EPISODE 057 - SLC13A5 - TESS Research Foundation with Kim Nye https://effieparks.com/podcast/episode-057-slc13a5-tess-research-foundation-kim-nye ONCE UPON A GENE - Episode 094 - The 12 Commandments to guide you when you're starting a rare disease patient advocacy group wiith Nasha Fitter and Mike Graglia https://effieparks.com/podcast/episode-094-mike-and-nasha 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/

ONCE UPON A GENE - EPISODE 210 GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka If you're passionate about the evolving landscape of genetic testing, this episode is for you. Gay Grossman, Patient Advocacy & Engagement Lead, and Paul Kruszka, Chief Medical Officer, are a wealth of knowledge and bring so much experience, shedding light on the crucial work being done at GeneDX.  EPISODE HIGHLIGHTS What is the importance and benefits of genetic testing? The most obvious benefit is knowing and understanding the why. Also, it's finding other individuals affected so you can get access to resources and support. Families can then come together to move treatment efforts forward. Without a diagnosis, you don't have a plan and you can get ahead of treatment options and treatment potential.  What are the differences in the genetic panels and tests? Panels are tests with a limited amount of genes— genes that are known to be associated with the condition you're looking for. Panels are obsolete almost as quickly as they're developed because new genes are associated with diseases and syndromes so often and so much can be missed. The advantage of using broader exome or genome testing is that it's always up-to-date with a higher likelihood of diagnosis. Genome testing is the more comprehensive test. What is GeneDX doing to educate clinicians and reach families about WES test over a panel? We have the resources and medical literature that supports using exome and genome testing. We have guidelines from the American College of Medical Genetics, the National Society of Genetic Counselors and The American Epilepsy Society. Everything is in our corner to decrease the diagnostic odyssey, but people are still using lesser testing. We do a lot of implementation science and education to get the message out there through our GeneDX Medical Science Liaison Team. This group goes out and educates clinicians, leads webinars and attends conferences. We also partner with advocacy groups to help test their community and find more patients.  What is the insurance coverage for testing? You're a customer of your insurance company, so you can call and ask why something wasn't covered if that's your experience. Request your certificate of benefits— the booklet that tells you what is covered. Read it and highlight what you may need so you are educated about what's covered and what's not and what the requirements are.  What is your advice for families who have a long wait time for genetic testing? You need to build your team with multiple clinicians. If you're hitting walls, add someone to your team, like a geneticist or other specialty. A specialist doesn't have to order testing, it can be your primary physician or pediatrician. Ask for support to get testing, access the resources from our website, print them and take them to your appointment and advocate for yourself to get genetic testing.  LINKS AND RESOURCES MENTIONED ONCE UPON A GENE - EPISODE 166 - A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD https://effieparks.com/podcast/episode-166-a-focus-on-patient-advocacy Epilepsy Awareness Day at Disney https://epilepsyawarenessday.org/ GeneDX Website https://www.genedx.com/ GeneDX Billing Resources https://www.genedx.com/provider-billing/ 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/