Welcome to NORDpod™, the voice of rare disease and the official podcast of the National Organization for Rare Disorders (NORD®), a 501(c)(3) patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. We are one community, and, together, our voices are louder.
Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA's Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved treatment. Dr. Donohue oversees the national hub designed to move the needle on that statistic, providing a shared pool of resources to spark new discoveries and speed up the creation of new therapies for rare diseases. Listen for the subtle sounds of the wild thunderstorm that rolls in during their taping as they talk through the critical role patient advocacy groups play in bringing rare disease patients into making these discoveries happen. Learn about the RDCA-DAP: the all-important central repository of shared data about rare diseases, with a very alphabet-soupy name. They also cover the powerful need for advocacy groups to ensure the data they collect from patients is gathered in a way that makes it possible for them to submit it to RDCA- DAP. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org. RDCA-DAP® is fully funded with a federal grant awarded to the Critical Path Institute: www.c-path.org/fda-acknowledgement. https://c-path.org/fda-acknowledgement.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
You're in for a treat on today's episode of NORDpod as I welcome chronic illness advocate Sarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children in the US alone may face Trichotillomania in their early tween/teenage years, a time in your life that may be challenging enough on its own. Sarah decided to do something by taking ownership of her condition, and, after many years of depression and suicidal thoughts, coupled with months in a residential treatment program. The moment she decided to take off her wig instantly transformed her into a vessel for purpose and impact. And so, she has taken on a new challenge: beauty pageants. So prepare yourself for a profoundly inspiring conversation about perseverance, motivation, and how to pay it forward. Enjoy the show.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org or email nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Rob Long is the Executive Director at Uplifting Athletes, a nonprofit organization that inspires the rare disease community with hope through the power of sport. In 1020, as a Pre-Season All-American playing for the Syracuse Orange Football team, he was contemplating which NFL team he wanted to be on. Until he was diagnosed out of the blue with a Grade III Anaplastic Astrocytoma, a rare form of pediatric brain cancer. Eleven years later, he's paying it forward, raising money and awareness for needed rare disease research. He joined Matthew Zachary for a candid conversation about the terrible privilege of surviving cancer, and, as a fellow SUNY Alum, they heavily bond over their mutual love of Wegmans. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Bobby Foster is a content creator, a rapper/producer, a spoken word poet, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Today on NORDpod, Matthew Zachary welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) at a very young age and has lived an accelerated life facing this rare condition. HHT is a congenital dominant hereditary disorder in which some blood vessels do not develop properly. Phil subsequently lived with a small pulmonary arteriovenous malformation in my lung. As a rare disease patient, he decided to give back to the community and pursue a career in medicine. As of this taping, Phil was recently accepted to Medical School and is looking ahead to a lifetime of critical clinical research to improve the lives of patients like him. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, email nordpod@rarediseases.org and visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Dr. Adrienne Hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincinnati Children's Hospital. Her path to becoming a physician started when she was eight years old when she read an article about retinoblastoma, which is cancer with a genetic cause. She decided then that she wanted to cure cancer. She joins Matthew Zachary to discuss a rare condition known as Hereditary Hemorrhagic Telangiectasia (HHT) and the differences in pediatric and adult care with specific regard to screenings and early detection. NORDpod is the official podcast of The National Organization for Rare Disorders. For more information, contact nordpod@rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her newborn to SIDS. Today she leads an incredible team and fights for equity and quality of life of tens of thousands of patients impacted by this rare genetic condition. Aside from nerding out on all things Sondheim, she and host Matthew Zachary also dive into the "How a bill becomes a law" process of drug development. There's nothing quite like getting a drug approved that you know will actually make a dent in the universe for thousands of people. Enjoy the show.NORDpod is the official podcast of The National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he'd get. After a car crash found him in the hospital on the receiving end of a random diagnosis of having extremely high creatine kinase levels, he was soon after diagnosed with Dysferlinopathy, specifically, Limb-Girdle muscular dystrophy, a rare muscle-weakening disease. No one asks to get sick but he went beast mode as a prolific blogger sharing his story and documenting the very real issues he had facing isolation, depression, anxiety, and a desire to make a difference for others like him.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Welcome to Season Four of NORDpod, the voice of rare disease. Kicking off 2022, and in recognition of Rare Disease Day, we are proud to welcome actor and social media influencer Adam Rose. Adam has amassed a considerable fan base by creating relatable, entertaining, and insightful video segments on TikTok, often sporting a blue cardigan. He is also a rare disease patient, advocate, and activist sharing his story about living with Gaucher's Disease.Rare Disease Day is committed to raising awareness for the community. This annual commemoration is focused on the theme of health equity. Part of health care inequity involves a lack of access to an accurate and timely diagnosis, treatment, and information about your disease. By raising awareness and showing your stripes, you can help improve the visibility of rare diseases.NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
On the show today, we welcome Dr. Edward Neilan, NORD's own Chief Medical and Scientific Officer. In this role, Ed oversees medical and research initiatives, including the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) program that NORD established in partnership with FDA and the Critical Path Institute (C-Path) He carries a unique perspective as a physician and researcher and would like to focus this episode of NORDpod on the value of data sharing from a clinician's perspective (which was also the topic he spoke about during the virtual 2021 RDCA- DAP Annual Workshop). Patient participation in the RCDA-DAP programs is a "pay it forward" opportunity to advance critical research and you're going to learn how you – yes you the listener – can choose to take an active role in this really important advocacy. NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Today's extra-long, extra-special BONUS episode is brought to you from the 2021 NORD Breakthrough Summit. Every year, NORD hosts its flagship conference in October to discuss what's new, relevant, and on the horizon in the rare disease space. The session we're featuring is “Designing Trials for Inclusivity, Equity, and Engagement,” The discussion addresses health care inequities and what we can do to create clinical trials that are more representative of and beneficial for the community. We hope you enjoy it, and if you get inspired to learn more about the event behind this episode, visit nordsummit.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Chris Brannigan, a major in the British Army, took off his boots for a 1,200-mile barefoot walk down the eastern seaboard of the United States in an effort to raise funds for the creation of a gene therapy treatment that could help patients like his daughter Hasti, battling Cornelia de Lange Syndrome (CdLS ). The NORD community is so proud of Chris and what he was able to accomplish in raising awareness for the 30 million Americans living with a rare disease and the importance of research. You can continue to follow Hope for Hasti's mission by visiting their website at https://www.hopeforhasti.org. NORDPod is the official podcast of the National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
On the show today, Kam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE myopathy, which is a very, very rare degenerative muscle wasting disorder. There's so much to unpack about her that can only be explained by hearing her story and understanding the journey she's undertaken. I'm not too fond of cat poster slogans, but she does make lemonade from her lemons. She has an extraordinary story, has written incredible pieces, and her Instagram will blow your mind. Kam is the very definition of what it means to be an advocate; when no one expects to become one, and they're thrust into the world of rare disease. And now she's giving back and inspiring hundreds of thousands of people. Enjoy the show. For more information about Kam, visit https://www.kamredlawsk.com. NORDpod is the official podcast of the National Organization for Rare Disorders. More at https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Joining me today is Lewis Freese, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I mean, not that there's ever a good time for this to happen but COME ON!) The condition is called IGA Vasculitis and typically affects 2 in 100,000 children each year. As a college student, this threw everyone for a loop, and now Lewis has to spend the rest of his life managing chronic kidney disease, among other fabulous things. He is a genuinely authentic voice for our next great generation. He advocates not just for rare disease awareness but for inclusivity, speaking out as a vocal member of the LGBTQ community. With all that said, we've got a ton of stuff in common and bonded in real-time over the very meaning of advocacy, never accepting the status quo and living life to help others. Follow Lewis on Instagram at https://instagram.com/lewisfreese1.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
On the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and her husband, Brian, tried to have a baby on their own for 4½ years until they were diagnosed with unexplained infertility. Endless cycles and tens of thousands of dollars later, they are now the proud parents of five beautiful children, one of whom — Mark —was born with a rare genetic condition. So join us as we examine what it means to be your own advocate, along with the challenges families face with fertility while raising a child with a rare disease. NORDPod is the official podcast of the National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
In celebration and recognition of Rare Cancer Day, I had the pleasure of speaking with Dan “Dry Dock” Shockley. Dan is a retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and hereditary colon cancer warrior. After his initial colonoscopy, he was recommended for a genetic panel, passed along to specialists, was diagnosed and treated (surgically) for AFAP/hereditary colon cancer all within a two-month span. Since then, Dan has worked alongside leading researchers/clinicians in the field to provide a patient's perspective as well as raise awareness for rare cancers, destigmatize ostomy bags, and lead a high quality of life as someone living with this condition. In this episode, we explore the positive impact that having access to a quick diagnosis, trained physicians, and ongoing treatment/testing can have on rare cancers. NORDPod is the official podcast of the National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Kicking off Season 3 of NORDpod, I am joined by Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronically ill people around the world and spread the word about Ehlers-Danios Syndrome and other chronic illnesses. From giving up her job as a research associate in 2010 to cashing out her life savings to come to the US for better care, Karina has managed to adapt her life around her symptoms and is the accidental advocate you need to hear to know. Through a necessary pivot to journalism, Karina is now one of the most vocal rare disease activists around, and her blog, "Holy Shit I Am Sick," is read by thousands. Her must-watch film, "We Are Visible," is so multi-award-winning and critically acclaimed, there's an endless scroll of credits on the homepage. This is how you advocate. Enjoy our conversation.NORDpod is the official podcast of the National Organization for Rare Disorders (NORD®) For more information, visit https://rarediseases.org and email nordpod@rarediseases.org with comments or feedback.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Rare Action Network. Nick and his wife were welcomed into the club no one asks to join when their daughter Hayden was diagnosed with an extremely rare condition known as Cystinosis. In navigating these new waters, they found NORD and the Cystinosis Research Foundation, which offered up much-needed peer support and resources. Hayden's future is bright these days, and Scott has channeled his Soccer Coach instincts with his Father's lobbying skills into becoming an outspoken patient advocate and storyteller at the legislative level. Now he is paying it forward with many others who are part of NORD's Rare Action Network. Policy is the end game because that is what unites the rare community with systemic changes that can make all of our lives better en masse. Enjoy our conversation.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
On the show today, it's all about Rare Disease Advisory Councils – or RDACs, for short. RDACs provide a platform for the rare community to have a stronger voice in state government. Joining us is NORD Director of Policy Heidi Ross, your one-stop human shop to understanding what these councils are, and how you – the listener – can take an active role in local policy changes. Long story short, RDACs can make a significant impact in your state, and you can contribute to that voice with resources from NORD's Project RDAC. NOTE: Sitting in for Matthew Zachary today is OffScrip Media Co-Founder and Chief Operating Officer Andrew MacDowell. For more information about NORD visit https://rarediseases.org.Privacy Policy and California Privacy Notice.
Today on NORDpod, we welcome back Leslie Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she's back to get real about the rare disease community with reflection on the past 18 months. The pandemic's impact cannot be understated. Millions of lives have been uprooted as we mourn the deaths of hundreds of thousands. But our shared pain and suffering are what make us stronger together. Leslie and Matthew also discuss the unique challenges facing the nonprofit sector and the medical profession in the wake of life being turned upside down. They acknowledge NORD's role in confronting the crisis head-on by implementing new support programs, financial aid systems, and incubation grants to startup charities in the space.
On the show today, Matthew Zachary welcomes Joann D'Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement that impacts the bone, muscle, and dental only on one side of the face. There is no cure, and the only treatment is invasive plastic surgery that only impacts the appearance and doesn't address any underlying conditions. Joann is an extraordinary human being who very bravely shares her remarkable story with us today. She is currently going through the "NORD RareLaunch: Forming a Foundation" program which is helping to incubate and accelerate her nonprofit ambitions. She is a consummate example of how one person can make a difference for so many others. Enjoy the show.
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s in peak health with Idiopathic Pulmonary Fibrosis — lots of syllables with a very bleak outlook. Eighteen years later, he's still here to talk about not just his incredible story but the extraordinary partnership he's struck with NORD's RareLaunch Research Ready program to kick off their first patient registry for this truly under-voiced community.
On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer was not better or worse, just different. And the same holds true for this community. Joining me is Seth Rotberg, a very vocal leader in the AYA rare disease community and the Founder of Our Odyssey. Seth lost his mother to Huntington’s Disease several years after she was initially diagnosed while he was in High School. He also tested positive for the disease along the way, bringing challenges and opportunities to the life in front of him. His mission is to provide support and resources to the AYA rare disease community to help them reach their full potential. Enjoy the show.
On the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, I’m glad you asked. We’ll be discussing NORD’s I AM RARE platform, a patient registry that, with the rare disease community’s help, allows for a better understanding of rare diseases, how to manage them, improve treatments, and generally make life better for so many. All this and more. Enjoy the show.
Dr. Rachel Bailey joins me today on the program. She is an Assistant Professor of the Center for Alzheimer's and Neurodegenerative Diseases and Pediatrics at UT Southwestern Medical Center. Today's episode is all about those two magic words, no not "COVID Vaccine — those indeed are magic words — no, I'm referring to "Gene Therapy." Yes, Rachel and I are here to give our version of "Gene Therapy 101" Growing up with a younger sibling with cerebral palsy set Rachel off in the direction she took borne of that condition, which explains her passion for science. I asked her how we can "ungeek" the speak, explain complex information to average humans, leverage empathy to improve relationships between doctors and patients, and how optimistic we should all be about the future of medicine. Alright - Let's get to it.
On the show today — we’ve got a big one or you — Yann Le Cam, Co-Founder and Chief Executive Officer of EURODIS and Rare Diseases International — and “enraged rare disease advocate”, as the media have hailed him. We only recently celebrated Rare Disease Day 2021 on February 28th so we thank all of you who participated and remind those who could not that anyone can be a rare disease advocate and activist 24/7/365 by visiting RareDiseaseDay.com. Jann and I talk about the history of rare disease advocacy, his personal experience raising a daughter with Cystic Fibrosis, the lessons he’s learned leading the space over the past 30 years, and what we can all look forward to over the next decade.
It is Season Two of NORDPod, and we're kicking it off in style with a "Last Year Tonight"-themed episode with NORD's President and CEO, Peter Saltonstall, from his undisclosed bunker in New England. 2020 was not the best of times, but it was not the worst of times either, as you'll hear from our conversation for NORD. In today's episode, we'll be discussing: Revisiting NORDpod Season One, NORD's awarding $36M to patients through their assistance programs, their pivot to virtual programming pandemic response and COVID Relief Assistance Program, and what's in store for 2021. Enjoy the show. Learn more about NORD.
At NORDpod, we share our individual stories and experiences through bi-weekly conversations to celebrate (and sometimes commiserate) all the ways rare disease impacts our lives. This week’s episode is a supersized BONUS POD from the 2020 Living Rare Forum plenary session "Rare Storytelling Hour." The session was moderated by Lesli Nordstrom, NORD Director of Marketing and Communications and featured panelists Matthew Zachary and Andrew MacDowell of OffScrip Media, Mike Porath, CEO & Founder of The Mighty and Kam Redlawsk, a designer and patient advocate, Listen in as our special guests explore and share what it means to be storytellers. You can share YOUR own story with us by visiting: https://rarediseases.org/shareyourstory/
On the show today, we’re talking all things rare cancer and highlighting the incredible impact that NORD’s Rare Cancer Coalition has made since it was founded — by our two guests: John Hopper President of the Board of the Fibrolamellar Cancer Foundation and Founding Chairman of the GI Cancer Alliance AND Jim Palma, Executive Director at the Target Cancer Foundation and Vice Chairman of the Board of Directors at NORD. There’s no profit I rare anything. Industry’s gotta recoup their costs by making it up in volume with all the big fancy cancers that get all the attention. Without entrepreneurial and philanthropic efforts by heroes like Jim and John, there would be no progress in the advocacy, research, and support resources for hundreds of thousands. So, to regroup, Why does NORD have a Rare Disease Coalition? What does it do? Who are their members? How can you join? Is rare cancer considered a rare disease? All those questions and more on the program; because it’s not always about what we have, it’s about what we all have in common. Learn more about the NORD Rare Cancer Coalition here.
On the show today, Tom Rhoads, advocate, caregiver, and Founder and CEO at Spencer Health Solutions, whose mission is — if we may so paraphrase — make life easier for families and caregivers by simplifying the complex world of prescription medication adherence. Tom talks about how to make the patient experience better by taking into account that any diagnosis is a family affair, and there’s more to living with an illness than biology. What do we mean? Well, the stress, anxiety, uncertainty, and cacophony of our health system could use a little implication — and that’s precisely what we focus on. What is patient-friendly tech? Do we really want smart toothbrushes? Smart coffee pots? Perhaps? But what could really come in handy is when advocacy goes right, and smart devices collide to transform even a tiny chunk of healthcare by meeting patients and their families where they’re at and on their terms. Enjoy the show. Learn more at https://spencerhealthsolutions.com
Today’s show is all about one patient’s story navigating the world of rare disease, you know – the club you didn’t ask to join, but somehow, once you’re here, you’re kind of family? Sarah Hill had a life interrupted at a very young age. After being fabulously misdiagnosed and not taken seriously for years, at the age of 16, all of the dots finally connected, and it was correctly identified that she had Wolfram Syndrome. This one’s a heavy hitter, folks. Wolfram is a rare autosomal-recessive genetic disorder that causes childhood-onset diabetes insipidus, diabetes mellitus, optic atrophy, deafness, and various other possible disorders. Isn’t it hard enough to be “WELL” in your teens and twenties, let alone slapped with a life-changing health condition you didn’t ask for? Ladies and gentlemen — Sarah Hill.
On the show today: Pamela Gavin, Chief Strategy Officer at NORD. This episode is Part Three in — you guessed it — our three-part series on Telehealth… only this time around, it’s all about policy, advocacy, and how the only thing that has ever moved the needle to make life better for patients are patients like you. COVID has forever changed how we value Telehealth and telemedicine to complement the need and/or desire for in-person visits with doctors. And while there are still mass-market adoption challenges, will there be a snapback effect when the proverbial dust settles, and payers decide to rethink their benefits? Pam also talks about the role of everyday patients as citizen activists who, through the power of their own voice, can literally force payer adoption and reverse billing and pricing structures; because no one deserves to go broke b/c of a rare disease. Sounds wonky but – again – to reiterate that the only thing that has ever fostered the change we need are people like us. We can all learn how to advocate for our rare disease community, because, together, our voices are louder.
On the show today: Crisis Management OR how to pivot with as much style and grace as possible when all plans go out the window. Joining us is Debbie Drell, Director of Membership here at NORD and Mary McGowen, Executive Director of the Myositis Association, whose mission is to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. How do leaders connect with their communities, partners, donors, and stakeholders when potentially scrambling to survive? Many small nonprofits are already doing what I call the “Doggie Paddle Therapy” just to keep the lights on every day. And yet there are incredibly positive outcomes that stem from uncertainty when you have the right circle of friends, a network of advisors, and a supportive coalition that’s got your back. Let’s learn how to lean into the pain, adapt on the fly, distill what is most critical and stay just as passionate and focused as we want and need to be — because tremendous opportunities lie inside unexpected challenges.
On this extra special BONUS EPISODE of NORDpod, it’s our very own Lesli Nordstrom, Director of Marketing and Communications! AND... In an epic role reversal, she dropped by OffScrip Media Studios in downtown Manhattan for a LIVE in-person interview with Matthew Zachary and OffScrip Media co-founder and COO Andrew McDowell. Yes, we took all the precautions. Yes, we socially distanced ourselves at the studio table. Yes, we may have been wearing tin foil hats. And yes, it was amazing to have actual human contact with another person who is not part of my family. So prepare ye for a fun, unfiltered, and down-to-earth chat amongst friends about passion, vision, purpose, community, and why we do what we do to make dents in the universe that matter. Enjoy the show.
On today's show, our time's enduring topic — No, not COVID, but it does make a distinct and necessary cameo on the show — No, we’re talking about Telehealth. Telemedicine. Tele–all the things. Perhaps even the telephone when required. Joining us are Dr. Natasha Shur, Medical Geneticist, and Monisha Kisling, a genetic counselor both from Children's National in Washington DC. Telehealth has been around for a long time, but its adoption akin to no one trusting eBay and Amazon in the 1990s with the safety and security of using your credit cards online. My oh my how times have changed. And the same is true for what we discuss in this episode. Has COVID created a forced adoption? Yes. Are more people realizing how nice it is — when relevant — to NOT have to sit in a waiting room for hours? Yes. Is Telehealth perfect and here to stay? Well, it may not be perfect — perhaps a work in progress that shows real signs of being a real option — but, yes, Telehealth is here to stay.
On today's show, host Matthew Zachary welcome parents Alice Alpert and Edgar Wonzica to share their story of entering the rare disease community by way of their beautiful son Leo being born with Treacher Collins syndrome, a very rare genetic disorder with fewer than 20,000 US cases per year. Edgar, a practicing psychiatrist with a background in climate science, and his wife Alice, a foreign affairs officer for the US Department of State, with a background in paleoceanography, found themselves navigating a foreign land but found support and community from the rare disease community. —— With an added boost from the modern-day benefits that Telehealth can bring. This episode is a truly inspiring story of love and hope when sometimes all you need to hear is, "Your baby is going to be just fine." Enjoy the show.
On today's show, the man, the myth, the legend, Mike Porath, Founder and CEO at The Mighty and member of the Board of Directors at NORD. For those unaware, The Mighty is the world's largest digital health community online at TheMighty.com and via a free mobile app for iOS and Android. 3MM members can't be wrong, and I can attest that this. We talk about his family's personal experience with rare disease, working for ABC and AOL before the Internet was a thing — and what it's like to look in your rearview mirror and realize you created the thing you only wished you had that is now helping millions of people every day. Download The Mighty mobile app for iOS and Android or join online at TheMighty.com
What a great way to kick off the NORDpod series, because on today’s show host Matthew Zachary will be speaking with the man, the myth, the legend Peter Saltonstall, President and Chief Executive Officer of NORD. Peter’s been at the helm of NORD since 2008 and has a storied 30-year history of leadership for the private sector and the nonprofit community. And he’s grown NORD into the powerhouse of influence and impact that it is today. We had a great conversation, and I hope you enjoy it. And maybe you’ll learn something. Who knows? Enjoy the show.
Welcome to NORDpod™, the voice of rare disease and the official podcast of The National Organization of Rare Disorders (NORD®), a 501(c)(3) patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. We are one community, and, together, our voices are louder. Learn more about NORD at http://RareDiseases.org
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