Shows
Rarely NormalEpisode 52: Monica Grippo | Child Loss and Women's HealthWe welcome Monica to the studio this week who shares not only her story with child loss and infertility but her commitment to women's health by founding Rhea Community. Her mission is to empower women to step into their reproductive power. By creating a safe space for women to share their stories, she's helping normalize conversations around pregnancy loss and infertility. 2025-07-2226 min
Rarely NormalEpisode 51: Kristi & Stella Levine | CACNA1AWe welcome Kristi and her daughter Stella in the studio this week to talk about her son (and brother) Trey who has CACNA1A. CACNA1A is located on the 19th chromosome and it plays a crucial role in the brain by encoding a protein that forms calcium channels. This dynamic duo is creating waves by advocating for disabilities and rare disease!2025-07-0851 min
Rarely NormalEpisode 50: Tricia Rogers | Food AllergiesOur 50th episode, welcomes Tricia Rogers to the studio. Her son Chase has lived with severe food allergies, since birth. We discuss how she navigated it as a first time new mom, and how she manages it as he grows. Her tips and tricks are incredibly helpful for any parent facing childhood allergies!2025-06-2445 min
Rarely NormalEpisode 49: Dr. David Fogelman | PhysiatristWe're honored to speak to Dr. David Fogelman this week - a physiatrist at Boston Children's Hospital. His perspective on patient care and finding a voice for those who are seeking advice and support, left us in awe. He's truly found his joy in pediatric medicine.2025-06-171h 00
Rarely NormalEpisode 48: Corie Eaton | BRAT1We welcome another BRAT1 mom to the studio this week - Core Eaton. The journey she experienced with her daughter Selah was profound and her message of love and light is one to be shared and celebrated. As she pays it forward with Selah's garden, we hope her message of positivity leaves a lasting impact.2025-04-2940 min
Rarely NormalEpisode 47: Sofie Ellice-Flint | BRAT 1This week, we welcome Sofie to the studio. A mom who found Lindsay while trying to make sense of her son Leo's BRAT 1 diagnosis. She shares the story of her son Leo, how she pays that forward with her two daughters and how she's keeping him and his memory alive. 2025-04-1555 min
Rarely NormalEpisode 46: Jenn + Jon Wall | Osteosarcoma & Pediatric CancerWhat a pleasure to have Jon and Jenn in the studio this week. We discuss this son Zach, who passed away in November 2021 at the age of 16, of Osteosarcoma, but focus on how they're paying it forward. They've developed Zach's Bridge, a certified 501(c)3 organization, that provides 1:1 peer support for advanced and bereaved pediatric cancer caregivers. They are truly focused on their goal of easing the pediatric cancer journey, and giving the entire family comfort and time to focus on what truly matters to them!OsteosarcomaPediatric cancerhttps://www...2025-04-081h 04
Rarely NormalEpisode 45: Dr. Heather Olson | NeurologstThis week welcome Dr. Heather Olson - someone we've wanted to chat with for a long time. She served as the neurologist for Lindsay's son Quinlan when he was being treated at Boston Children's hospital. Her research is in the area of Epilepsy Genetics, including understanding the genetic causes of early life epilepsy syndromes and phenotype-genotype associations. We're so grateful for her work and the special relationships she brings to her patients.2025-03-3142 min
Rarely NormalEpisode 44: Jed and Sarah Berger | Autism and Down SyndromeWe couldn't be more honored to have Jed and Sarah in the studio this week. Their son Jonah has Down Syndrome and Autism. This conversation shed light on the love and light of kids like Jonah, while also celebrating the tribe of care committed to supporting their needs. 2025-03-2555 min
Rarely NormalEpisode 43: Katie Steer | 6q Chromosomal Deletion (14.3-16.1 deletion)What a pleasure and joy it was to welcome Katie to the studio this week. From her journey to motherhood to caring for her son Cashen who has a deletion of his 6th chromosome, her spirit is incomparable. Her love for Cashen radiates and she's a true inspiration for single mothers and rare disease parents everywhere. 2025-03-181h 00
Rarely NormalEpisode 42: Kendra Gottsleben | Mucopolysaccharidosis (MPS)This week we welcomed Kendra to the studio - founder of Rare by Design (a non-profit that works towards creating awareness, inclusion and representation for individuals with a rare disease). Her experience living with MPS (mucopolysaccharidosis) is one that needs to be shared - mainly because of her infallible outlook on life. We laughed so hard, but learned even more, about the importance of inclusion and connection.2025-03-1156 min
Rarely NormalEpisode 41: Arianna Wilson | Acute Lymphoblastic Leukemia (ALL)What a force! This week we welcome Arianna Wilson to the studio, who’s fighting to create awareness for childhood cancer after she lost her identical twin sister Alex to Acute Lymphoblastic Leukemia (ALL) when they were 16. From sharing the power of twin connections to keeping her memory alive and the development of Alex's Team (https://alexs-team.org/) - Arianna and her family are celebrating Alex's life and legacy every single day, while paying it forward by pioneering programs in pediatric oncology research and care.@alexsteamfoundation2025-03-0445 min
Rarely NormalEpisode 40: Rarely Normal Hosts | Q&AWe're closing out Season 2 and 2024 with a host Q&A. We talk about what we learned this year, the impact of guests, and the importance of sharing 'the hard stuff.'We can't wait to connect again in 2025. Thank you all our guests this year!2024-12-1736 min
Rarely NormalEpisode 39: Olivia Mahoney | IVF + adoptionThis week, we welcome Olivia Mahoney to the studio, to talk about her journey to motherhood. From years of infertility and IVF to her most recent experience with adoption,. Her emotional journey left us in awe, and her openness to be an outlet for others facing similar situations is allowing her to pay it forward!2024-12-101h 38
Rarely NormalEpisode 38: Arley Schaefer | Myasthenia Gravis (MG)This week, we welcome Arley Schaefer who joins us to talk about her journey with Myasthenia Gravis (MG). It's a chronic autoimmune disease that occurs when the body's immune system produces antibodies that block the communication between nerves and muscles, preventing the muscles from contracting. We also discussed her tough pregnancy with identical twins and epilepsy she experienced as a child. She's a truly an inspiration.2024-12-0340 min
Rarely NormalEpisode 37: Sarah Woods | Hereditary Hemorrhagic Telangiectasia (HHT)This week, we welcome Sarah Woods to the studio. We talk about her experience with HHT, a a rare genetic disorder that causes abnormal blood vessel development. What's even more special, is Sarah is paying it forward with her non-profit Serenely Guided Foundation, which focuses on helping guide the patient and caregiver journey with ease.https://www.serenelyguidedfoundation.org/https://curehht.org/2024-11-2637 min
Rarely NormalEpisode 36: Rachael Brown | Spinal Muscular Atrophy (SMA)Rachael Brown joins us in the studio this week to talk about her amazing daughter Kate, and her journey with SMA (Spinal Muscular Atrophy). We discuss her path to diagnosis and her passion for finding treatment and ultimately a cure. And don't forget to check out the Flying Squirrel feeding pump holder - https://www.etsy.com/shop/QuirkyDad - invented by Rachael's husband Patrick Brown.https://www.curesma.org/https://www.instagram.com/curesmaorg/2024-11-1950 min
Rarely NormalEpisode 35: Molly Bice Jackson | Child LossWhat a powerful conversation! This week, we welcomes Molly Bice Jackson to the studio. She shares her daughter Lucy (Lucia) with us. Her message of love and connection is profound. She's a public speaker and author (book releasing in 2025) and her perspective is profoundly powerful!https://www.mollybicejackson.com/2024-11-1259 min
Rarely NormalEpisode 34: Michelle Fruhschien | Jordan's SyndromeWhat a powerhouse mom and rare disease advocate - we are thrilled to welcome Michelle to the studio this week. We talk about her daughter Hailey and her ultra-rare Jordan's disease (which is means it affects less than 1-50K people) as well as the power of 'community' and fight to be seen!https://mamabearforrare.com/https://jordansguardianangels.org/Jordan's Syndrome Letters + Numbers: PPP2R5D2024-10-2841 min
Rarely NormalEpisode 33: Daniel DeFabio | Menkes DiseaseWe're overjoyed to welcome Daniel DeFabio to the studio this week. We speak about his son Lucas, who had Menkes Disease, and about the stages of grief, paying it forward, the work he's doing on Global Genes and the creating of The Disorder Channel.Menkes Disease letters + numbers: ATP7Aglobalgenes.org/https://www.thedisordercollection.com/2024-10-2250 min
Rarely NormalS2:E12 Daniel DeFabio | Menkes DiseaseWe're overjoyed to welcome Daniel DeFabio to the studio this week. We spoke about his son Lucas, who had Menkes Disease, as well as about the stages of grief, paying it forward, the work he's doing at Global Genes and the creation of The Disorder Channel.
https://globalgenes.org/
https://www.thedisordercollection.com/
Letters and numbers for Menkes Disease are ATP7A 2024-10-2242 min
Rarely NormalEpisode 32: Pregnancy, Infant and Child Loss Awareness DayThis week, we take a moment to commemorate Pregnancy, Infant and Child Loss Awareness Day (Oct 15th). We speak about the essence of the day, what it means to the community and discuss what would be Lindsay's son Quinlan's 10th birthday.To to participate in the International Wave of Light, an annual ceremony to honor the memory of babies lost to pregnancy and infant death: When: On October 15th at 7 PM local time How: Light a candle for at least an hour to create a wave of light that spreads across the world Why: ...2024-10-1536 min
Rarely NormalEpisode 31: Jamie Day | MediumWhat a fascinating conversation! This week, we welcome Jamie Day to the studio. We leaned all about mediumship and what it's like to 'engage;' with those who have past and discussed how she harnesses her 'gift' to support others on their grief journey. Thank you Jamie for shining a light on the things we cannot see.2024-10-0837 min
Rarely NormalEpisode 30: Marissa Curcuru | Autism Spectrum Disorder (ASD)We welcomed Marissa Curcuru to the studio this week to talk about Autism Spectrum Disorder (ASD) and her experience with her son Nolan. Her perspective is powerful and she's committed to paying it forward by supporting others with their ASD journey, She even writing a children's book to help normalize the disorder - check out Unique You See (https://www.amazon.com/Unique-You-See-Marissa-Curcuru/dp/B09YHBG8GD)2024-10-0155 min
Rarely NormalS2:E9 Marissa Curcuru (parent)We welcome Marissa Curcuru to the studio this week, to talk about Austism Spectrum Disorder (ASD) and her experience with her son Nolan. Her perspective is powerful and her commitment to paying it forward by supporting others with ASD and even writing a children's book to help normalize the disorder.2024-10-0156 min
Rarely NormalEpisode 29: Marybeth Ellis | Child LossThis week, we welcome Marybeth Ellis in the studio. Her raw, authentic and loving perspective on child loss is palpable. We're honored she shared her daughter Sidney with us and are in awe of her ability to give back to her community, and be a beacon of hope and love, in her name.#childloss2024-09-2453 min
Rarely NormalEpisode 28: Julee Armitage | Nuclear Ribonucleoprotein H2 (HNRNPH2)What a pleasure to host Julee in the studio this week. We discussed her daughter Remy who has heterogeneous nuclear ribonucleoprotein H2 (HNRNPH2), playgrounds, connection, inclusion, and zebra's.2024-09-1746 min
Rarely NormalEpisode 27: Tracy Dixon-Salazar | Lennox-Gastaut Syndrome (LGS)It was an honor and a pleasure to have Tracy in the studio this week. Not only is she a rare disease parent (her daughter has Lennox-Gastaut Syndrome), but she's the Executive Director of The LGS Foundation, a neuroscientist, geneticist, and patient advocate. We all should be more like Tracey and her daughter Savannah!2024-09-101h 02
Rarely NormalEpisode 26: Keri Cote | Smith-Magenis Syndrome (SMS)We welcome a unique and special guest this week to the studio. She's a physician but also a parent with child who has a rare disease. Keri comes to talk to us abut her beautiful son Tatum, who has Smith-Magenis Syndrome (SMS). We talk about listening to your gut, finding the right community and creating balance.2024-09-0354 min
Rarely NormalEpisode 25: Gwen Maesano | Vestibular SchwannomaWhat a ride! We welcomed Gwen, a true survivor, to the studio this week to share her journey with a vestibular schwannoma in her brain. What a story of resilience and the power of the human spirit. A good life lesson on learning to listening to your body!2024-08-271h 05
Rarely NormalEpisode 24: Kate Manacek | Micro Preemie/PrematurityKate Manacek is back in the studio - this time to share her story and journey to motherhood for the second time, with a micro preemie. Her daughter Ellie was born at 27 weeks and spent the first 6 months of her life in the NICU. Ellie has taught Kate, her family and loved ones the power of love, resilience, and strength.2024-08-201h 03
Rarely NormalEpisode 23: Katie Psoinos | Infertility/IVFWhat a journey and special human! This week we welcomed Katie Psoinos to the studio to talk about her decade + long IVF journey. We laughed, we cried, and we learned so much about the power of the human spirit.2024-08-131h 17
Rarely NormalEpisode 22: Jillian Arnold | ASMDWe're kicking off Season 2 with Jillian Arnold. It was an honor to have her in the studio sharing her love and life with her two incredible kids - Roman and Stella. Both have ASMD (Acid sphingomyelinase deficiency) and her story is definitely one to share! Her perspective on rare disease is so unique and powerful.2024-08-0651 min
Rarely NormalEpisode 21: Bonus!A massive thank you to the guests and listeners in Season One. In this bonus episode, we answer listener Q&A and share some laugh-out-loud bloopers.Season Two coming in August!2024-06-1834 min
Rarely NormalEpisode 20: Lisa Mueller Welsien | Grief SupportSupport systems for those going through 'rarely normal' circumstances are critically important, which is why we're so blessed to have Lisa (Mueller) Welsien in the studio this week. Her nephew Kyle had CHD (congenital heart disease) and her love, light and support for her sister and family is a life lesson we'll continue to carry with us.2024-05-2846 min
Rarely NormalEpisode 19: Nicole Johnson | FOXG1 SyndromeIt was an absolute privilege to have Nicole Johnson in the studio this week, to discuss FOXG1 syndrome and her daughter Josie. Nicole and her warrior team of researchers, fund raisers and awareness creators left us in awe. Her children's book, Joyfully Josie is also a 'must read' for all parents and educators.2024-05-211h 01
Rarely NormalEpisode 18: Amy Gruenhut | Viral EncephalitisWhat an inspiration. The epitome of 'rarely normal,' Amy joins us this week to talk about her experience surviving viral encephalitis. From learning to walk and talk again, to running marathons, she is a true inspiration and example of the power of the human spirit.2024-05-1450 min
Rarely NormalEpisode 17: Nicole Tatgenhorst | BRAT1What a force of energy. We're thrilled to have Nicole Tatgenhorst in the studio this week, after we slid into her DM's! Her daughter has BRAT1 and we learned so much about the importance of inclusion, empathy and the similarities between rare diseases,2024-05-071h 03
Rarely NormalEpisode 16: Tracey Lord | Autism Spectrum Disorder (ASD)This week we're joined by Tracey Lord, who captures the essence of what it means to approach hard things with humor. Her 9 year old daughter Ari has Autism Spectrum Disorder (ASD) and Tracey took us on a journey from her diagnosis to current day therapies. Tracey AND Ari are a force to be reckoned with2024-04-3048 min
Rarely NormalEpisode 15: Nina Cotti | Child LossWe're so privileged to welcome Nina to the studio this week and shine a light on her son Beau. Her realness when it comes to her grief journey and love for Beau was incredibly touching. Hopefully this episode will provide support for other child loss parents. While grief is personal and unique, its important to know you aren't alone.2024-04-2339 min
Rarely NormalEpisode 14: Ada Lio | ZTTKWhat an incredible conversation we had this week with Ada Lio. Lukie may be the CEO of the household, but Ada and her husband are on a mission to find a cure for ZTTK. We were overwhelmed by her grace, light and perspective on parenting a child with a rare disease. Listen now and check out https://lukie.org/2024-04-1640 min
Rarely NormalEpisode 13: Meghan Johnson | Child Loss/StillbornThis week, we welcome Meghan Johnson to the studio, for an incredibly heartfelt and powerful conversation about her daughter Grace. Grace was stillborn and we're incredibly grateful for Meghan's vulnerability and openness. We learned so much about what the experience is like and the importance of community and connecting with people of shared experiences.2024-04-0934 min
Rarely NormalEpisode 12: Sarah Holveck | BRAT1This week, we welcome Sarah to the studio. She shares the story of her daughter Summer, who had BRAT1. The small but mighty BRAT1 mom group is a force to be reckoned with and we're honored to be able to share her story.2024-04-0249 min
Rarely NormalEpisode 11: Olivia Hussey | Bereavement Social WorkerThis week, we welcome an incredibly therapeutic guest. Olivia served as the bereavement social worker at Boston Children's Hospital, supporting parents and families facing unprecedented life experiences. Her warmth and thoughtful nature is palpable.2024-03-2644 min
Rarely NormalEpisode 10: Abby McDonald | Child LossWe loved having Abby in the studio this week. She shared a very real, very honest perspective on what it means to be young, first time parent of a child with a rare disease. Her authenticity and openness is contagious.2024-03-1944 min
Rarely NormalEpisode 9: Lisa Mason | Grief SupportWe're thrilled to welcome Lisa to the studio this week. Not only has she been an enormous support system for Lindsay but she provides a unique personal perspective on grief, loss and love.2024-03-1239 min
Rarely NormalEpisode 8: Kristina Coppens | Medical CaregiverThis week we welcome Kristina Coppens to the studio - our first medical caregiver episode! She was the primary nurse of Lindsay's son Quinlan, and they've since built a unique bond and life-long friendship. We talk about what it's like to care for medically complex children and the wide range of support nurses provide their patients and families.2024-03-0544 min
Rarely NormalEpisode 7: Hannah Schermerhorn | Arteriovenus Malformation (AVM)In our final week of Rare Disease month, we welcome Hannah. Her son Sage was born with cerebral AVM (Arteriovenus Malformation) and her story was so moving and enlightening. The way she has connected with his care givers and continues to carry on his legacy is inspiring beyond words.2024-02-2757 min
Rarely NormalEpisode 6: Jillian Smith | Adrenoleukodystrophy (ALD)In this third week of Rare Disease Month, we connect with Jillian Smith whose pre-teen son has ALD (adrenoleukodystrophy). From testing to diagnosis to advocacy, she's a force for creating awareness of and support for ALD.2024-02-2039 min
Rarely NormalEpisode 5: Ali Lofton | BRAT1Week two of Rare Disease month, and we weclome Ali Lofton to the studio. She and co-host Lindsay, met through a BRAT1 group, and she joins us this week to share the story of her son Wyatt. Her perspective on leading with an open heart, listening to your body and advocating for testing was profound. Enjoy!2024-02-1355 min
Rarely NormalEpisode 4: Marissa Bishop | CDKL5This week, we kick off Rare Disease month, by connecting with Marissa Bishop whose son Gregory hasCDKL5 Deficiency Disorder (CDD). Her passion for creating awareness for the disease was infectious. As Gregory's mom and #1 cheerleader, Marissa's a powerhouse advocate for rare disease support.#CDKL52024-02-0646 min
Rarely NormalEpisode 3: Dani Langille | GriefThis week, we're joined by force of support! We talk to co-host Lindsay's, sister Dani, about the enormous sacrifices she made to help care for Quinlan, who lived with a BRAT 1 gene mutation. We discuss their special relationship and the emotions she faced being so close to a child with a rare disease.2024-01-3045 min
Rarely NormalEpisode 2: Kate Manacek | Grief SupportThis week, we're joined by Kate Manacek. Friends with co-host Lindsay for 25+ years, she provides a unique perspective on how to be a support system for a loved one facing a rare disease or medical complexity.2024-01-2335 min
Rarely NormalEpisode 1: Lindsay Weekes | BRAT1We're kicking off the Rarely Normal Podcast with the inspiration behind it all. In our first episode, we talk with co-host and child loss mom, Lindsay Weekes about her journey with son Quinlan who lived with a BRAT 1 gene mutation.2024-01-1557 min