Rarely Normal

Excited to have Ashley in the studio to help us discuss different forms of anxiety and unpack solutions. From cognitive restructuring to the power of journaling and identifying patterns, we loved this open and authentic episode Buy the Journal: https://a.co/d/0akrFLSU Website: https://fourprogress.com/

Adult diagnoses are often not discussed, which is exactly why our conversation with Amy is so critical. She wasn't diagnosed with ADHD until adulthood (thanks to her determination!) and not until she became a mom, that she was diagnosed with OCD. We hope this episodes inspires others to seek medical testing and intervention, no matter the age!Check out her blogs:Facebook page:  https://www.facebook.com/61588540267695/Blog on systems thinking: https://meanwhile.ghost.io/

We couldn't be more grateful to Kelsey for sharing her daughter Stella with us. She's fearless and strong, beyond measure. Her work in the Courageous Parents Network is paying it forward to other parents and families dealing with child loss and we're honored to have her join the podcast and share her perspective on love and loss.https://courageousparentsnetwork.org/

We're beyond grateful to Lolita for sharing her son Michael's journey with ALD. From discovery to treatment, to his day-to-day care, we're in awe her of love and compassion for others. We even love how his sisters are getting into the medical field - inspired my Michael.https://www.aldalliance.org/https://www.hopkinsmedicine.org/health/conditions-and-diseases/adrenoleukodystrophy

What a treat for our listeners, to have Dr. Ryan in the studio. Her work with medically complex children, providing support for patients, but also the whole family, via her caregiver coaching. Her work fills a much needed gap in the community and her commitment is infectious.https://www.foundationfirstpt.com

Saddie Baddies unite! This week, we talk about all the facets of grief with Jasmine, who started her grief journey after the death of her father. This open and vulnerable conversation shows how universal grief is, how important it is to find a tribe, and how critical is to 'feel the feels.'

This week, Kim Bradley shares her journey being a rare disease mom. Her daughter Laelynn (which is means 'flower of hope'), has faced 100's of surgeries and continues to shine a light of love. We discuss everything from Laelynn's day-to-day care, parenting a big family, PCA (patient care assistant) and the need for rare disease parents to rely on their tribe!

We're honored to welcome Shawna to the studio this week to talk about her son Keenan and his journey with Microcephaly Capillary Malformation Syndrome. From seizers to surgeries and seeing specialists in two states, their strength is palpable. Now Shawna is paying it forward by creating counseling and support for bereaved parents with Keenan's Caring Konnections and raising money for epilepsy.https://www.caringkonnections.com/https://www.instagram.com/keenans_caring_konnections/

What a pleasure it was this week, to connect with Ashley about her connection to loss. Her ability to apply experiences being a Reiki Master, reading tarot cards, working in hospice, and studying astrology and signs, means she has an incredibly interesting POV on life, dealth, and everything in between. Check her out at ashleypagehealing.com

November is Pancreatic Cancer Awareness month. It's considered a rare cancer, since about 3% of all new cancer diagnoses are Pancreatic but it's become a significant public health issue because it is the eighth leading cause of cancer death. We welcome Kate McKenna to the studio to shed light on a cancer that's impacted multiple members of her family. She shared her grief journey, experience supporting her family, and how she's taking care of her own health.

We're honored to have Amy Butterworth in the studio this week to talk about her daughter Cindy Sue. It's a emotional ride and we're grateful for Amy's vulnerability and authenticity.

This week we reconnected as co-hosts to celebrate and discuss Lindsay's grief coaching certificate. She's 9 years into her grief journey, after the loss of her son Quinlan to an exceedingly rare disease (BRAT1) and we discuss where we in now, look back at the first year of grief, and discuss how this certificate will support in the future of our journey.https://lovequinlan.com/

This week, we are honored to mark Breast Cancer Awareness month by connecting with April Goodman. Now 5 years in remission, her journey was fast and furious and she shared her experience with diagnosis, treatment, and juggling a busy family and job. She's a true warrior with wise advice for anyone facing a similar diagnosis. Breast Cancer Research Foundation: https://give.bcrf.org/Runway for Recovery: https://runwayforrecovery.org/

The power of positivity and came through in spades this week. We welcomed Tennille this studio this week to connect with her about her son Jett and his rare brain condition Pontocerebellar Hypoplasia (PCH). Her commitment to giving him the best quality of life, paying it forward, and living a life he'd be proud of, we were so inspired by Tennille. - Learn more about PCH here: https://rarediseases.org/rare-diseases/pontocerebellar-hypoplasia/- She also wrote a book! Check out 'A Blended Diet How-To For Your Tubie' https://a.co/d/hdhN0Ky

What a special guest and impactful episode - we're thrilled to connect with Emily this week about her daughter Cora. Her story is one that had to be told! From her path to motherhood, to the impossible decisions she had to make, planning a memorial and carrying on Cora's life and legacy in a way that's special to her and her family...to then face impossible decisions with her second child...Emily's light and thoughtfulness is will leave a lasting impression.Zellweger syndrome is a rare disorder that affects multiple organs and systems. It is caused by mutations in genes responsible for the assembly and function of peroxisomes, small organelles in cells that play a crucial role in breaking down certain fats and toxins.

We couldn't be more grateful for such a powerful conversation with Kristen Carrier. Her daughter August was born congenital diaphragmatic hernia (CDH) - unknown to her and her husband - and passed away shortly after birth. Her ability to pay-it-forward by leading with kindness and vulnerability, left an indelible impression. She had incredible advice for other grieving parents and is raising her two boys to not only remember August, but to openly talk about her and celebrated her.

We 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.

We 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!

Our 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!

We'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.

We 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.

This 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.

What 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.zachsbridge.org/

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 for her work and the special relationships she brings to her patients.

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 inclusion and connection.

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.@alexsteamfoundation

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. She's a truly an inspiration.

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/

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/

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: ATP7Aglobalgenes.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 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: To remember babies lost to miscarriage, stillbirth, SIDS, or death of a newborn How to get involved: You can light a candle at home or attend a ceremony How to share: You can share photos of your lit candle on social media 

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/B09YHBG8GD)

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!

Support 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.

It 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.