May you & yours have a safe and good 2024.
Please join us for Season 5 releasing soon, you can find Raising Rare on your favorite Podcast platform.🎧

Our team is not here to give medical advice or guidance but, we can and will let you know Raising Rare cares!
We have high hopes for 2024 and that hopeful wish carries over to our audience, Caregivers & Rare Disease Patients. 💛

We here at Salem Oaks would like to remind our audiences, if you’re struggling or don’t know how you’re feeling, we hear you & we see you. 🤗

Season 4 had an Mental Health Awareness tone & we’re incredibly grateful to all of our guests and Co-Hosts in sharing their truths/stories, challenges and insights on Mental Health in the world, in the Rare Disease Communities.
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Kacy & Tim share their experiences as a Rare Family & what their journey has been like over the years.
They also share with the Co-hosts, how they’ve remained so hopeful & what it has been like taking part in fellowship with others in the:
Cystinosis Research Network.

With Kacy being a Rare Patient, her dad is a special Rare Parent. Tim had the opportunity to gift his right kidney to his daughter in 2015. 💛

Sophie’s Hope which is one of the organizations Jamas has created.
The purpose of the creation was to share Sophie’s story with the world but, also as sort of a patient support group. CureGSD1B is the second no-profit he created to provide support to research and those studying the disease. 💛

Being a Rare Disease family comes with challenges for sure however, Jamas & his wife have really made a big impact already.

Rare Parents like Megan, she had to regroup quickly and learn how to start advocating for her daughters. As their journey continues, Megan has also tried to teach her daughters how to become better advocates for themselves. 💛

His Rare journey started a decade ago. Dillon is our intern but, more importantly he is our dear friend. 10 Years ago, he got the life-changing clinical diagnosis of Friedreich’s Ataxia 🧬

Being a Rare Parents was not something Susan & her husband planned but, they have done a wonderful job in raising awareness and embracing the love of/for their communities. 💛

Please Check Out:
apricityhope.org for more information for Caregivers.

We want our audiences to remember, it’s okay to take breaks, breathe, check-in with yourself and don’t force yourself to not ask for help as well.😌

Being parents of Rare Disease kiddos; Brittany & Sanath, who each have kiddos w/different diseases, tell/discuss how their lives have changed & how they’ve changed as people too. 💛

Back in August 2023; when we recorded, Terry updated us on how the past 3 years have gone, his 4 million dollar gamble, a massive career change & how Michael is doing now after receiving a dose of Gene Therapy.