Sign in

Salem Oaks

@salemoaks.bsky.social
5 followers 1 following 38 posts

We create patient education about Pharma R&D to empower patients and patient organizations.

PostsRepliesMedia
Salem Oaks @salemoaks.bsky.social · 14/02/2024
From all of us: We’d like to wish everyone to have a RARE Valentine’s Day! 💌 XOXO, Salem Oaks, LLC 🧡
000
Salem Oaks @salemoaks.bsky.social · 13/02/2024
Just a quick reminder to check out our Season 5 Premiere episode before the new episode drops. 🎧🧬 www.raisingrare.fm/episodes/ane...
000
Salem Oaks @salemoaks.bsky.social · 02/02/2024
We are happy to share, the NEW SEASON is now out!!! Listen to wherever you find podcasts! ♥️
011
Salem Oaks @salemoaks.bsky.social · 01/01/2024
Happy New Years from all of us at Salem Oaks & on the Raising Rare podcast! 🎆
000
Salem Oaks @salemoaks.bsky.social · 31/12/2023
Good Morning & Happy New Year’s Eve. Our final Top #mostlistened to episode was: Our Season 4 Premiere. Even though we didn’t have a guest on this episode, we still got updates from our Co-Hosts. From changes in their lives, to the holidays, struggles and hopes for the new year; 2023. 💛
100
Salem Oaks @salemoaks.bsky.social · 30/12/2023
Coming in at No. 2, we highlight the story of Kacy & Tim Wyman. Kacy is a 21 year old college student who was diagnosed with Cystinosis at age the age of 4 years old. Tim & Kacy have a truly Rare Disease story. 💛
100
Salem Oaks @salemoaks.bsky.social · 29/12/2023
No. 3, We have Jamas LaFreniere’s story of being a GSD/Rare parent. Jamas’ daughter Sophie has Glycogen Storage Disease 1B. Jamas discusses how their diagnosis journey has been for him, his wife & Sophie. 💛
120
Salem Oaks @salemoaks.bsky.social · 29/12/2023
At No. 4, we have Megan Loden’s story, Megan has three kiddos. 2 of her 3 kiddos are Twin Daughters, who both have a genetic rare disease: Familial Cerebral Cavernous Malformation aka FCCM. Megan’s daughters were diagnosed during Covid. 💛
110
Salem Oaks @salemoaks.bsky.social · 28/12/2023
Now let’s countdown the Top 5 Most Listened to episodes… Coming in at No. 5, Meet Dillon Loomis-Head. Dillon is a 28 year old, FARA ambassador, a Mental Health Advocate & a Rare Disease patient. 💛
100
Salem Oaks @salemoaks.bsky.social · 27/12/2023
In this special episode, we had to absolute pleasure speaking to Rare Mama: Susan Geoghegan. Susan has two kiddos w/Mitochondrial Disease & her story is empowering and embracing. However difficult & grief filled Susan’s story is, she has found light. 💛
100
Salem Oaks @salemoaks.bsky.social · 27/12/2023
Our Raising Rare Co-Hosts have a discussion that lets the audiences in on all the costs that come with Raising Rare. Caregiving is not easy & it comes w/some harsh truths. 💛
200
Salem Oaks @salemoaks.bsky.social · 27/12/2023
Episode 11 is next, we checked in with one of our first guests to join us on the podcast. Terry Pirovolakis is a parent. Terry’s son Michael has a disorder called: Spastic Paraplegia aka SPG50. 🧬
110
Salem Oaks @salemoaks.bsky.social · 27/12/2023
We’re gonna change it up a little… Now, We have, Episode 12 of Raising Rare. Which is an update from Dillon Loomis-Head about his journey with Friedreich’s Ataxia over the summer, into the early fall. ❄️
100
Salem Oaks @salemoaks.bsky.social · 27/12/2023
After our own Christmas Break… We’re back with our Episode Review. Join us on out catch-up before the New Year! ☃️
000
Salem Oaks @salemoaks.bsky.social · 24/12/2023
From all of us at Salem Oaks LLC, We’d like to wish you & yours Happy Holidays ⛄️
000
Salem Oaks @salemoaks.bsky.social · 20/12/2023
No. 20: Patrick Girondi is an author, songwriter, singer, founder of a gene-therapy company & most importantly a parent. Patrick's son has a rare disease called: Beta Thalassemia. 💛
000
Salem Oaks @salemoaks.bsky.social · 20/12/2023
Coming in at No. 19, We have the story of Vik Sharma. Vik is a father of two wonderful children, Lily & Mira. Mira was born non-verbal and non-ambulatory due to Cerebral Palsy. Vik is a seasoned caregiver who has created an app: MiraKare And we can't wait to see the important impact of the app. 💛
000
Salem Oaks @salemoaks.bsky.social · 19/12/2023
Coming in at No. 18: We have the story of Julia Taravella. Julia is a mother with 2 sons who both have a Lysosomal Storage Disorder; AGU, Aspartylglucosaminuria. Julia's story is one marked with hope, perseverance & 💛.
000
Salem Oaks @salemoaks.bsky.social · 18/12/2023
We got something exciting to share... 🤗 Over the next 2 weeks, We will be sharing the Most Listened to Podcast episodes from Season 4. 🎧 🎙️ So stayed posted. Remember Raising Rare can be found wherever you like to listen to podcasts.
000
Salem Oaks @salemoaks.bsky.social · 17/12/2023
The Raising Rare podcast team is so thankful for all of you! Thank You for tuning in to every episode, sharing your stories & giving us the energy that we have needed to keep this going. Tune in to Season 5 when we return w/more stories in 2024. You can catch-up on the Podcast wherever you listen. 🎧
Season 4 Finale Announcement!
000
Salem Oaks @salemoaks.bsky.social · 27/11/2023
Thank you all for the support this year. Listening and subscribing helps a lot, now you can also share Raising Rare by wearing apparel from our merch store. apparel4zebras.etsy.com?coupon=CYBER...
000
Salem Oaks @salemoaks.bsky.social · 25/10/2023
A new episode of Raising Rare is available now. www.raisingrare.fm/episodes/nev...
raisingrare.fm
Never Give Up.  Mistakes will lead you to discoveries — Raising Rare
At 2 years old, her boys first showed signs of speech delays which triggered a long journey to a diagnosis. After visiting multiple doctors and hospitals all over the country it turned out to be an ...
001
Salem Oaks @salemoaks.bsky.social · 05/10/2023
We just published a new episode of our podcast Raising Rare. www.raisingrare.fm/episodes/mir... This one might be especially interesting for some of you in the Health Tech space.
022