Rarely Normal

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: 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 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