Rarely Normal

This 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 f...

We 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.

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.

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 incl...

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 Ale...

We'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!

This 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!

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. S...

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.o...

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...

What 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/

What 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: PPP2R5D

We'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: ATP7A globalgenes.org/ https://www.thedisordercollection.com/

This 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 a...

What 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.

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...

This 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. #childloss

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.

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!

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.

What 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!

Kate 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.

What 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.

We'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.

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!