Check out my latest articles/stories on podcasts published on different media outlets- discover the challenges and triumphs of reaching, understanding, and advocating for a rare diagnosis!!

Click here for my article in Rare Revolution Magazine
Read more about the journey, the community, and strength it takes being a “Rare” parent

Once Upon A Gene Podcast: My story
Please visit this website and check out my podcast that focuses on the Netflix Show Special. Also note, Morganoff is my maiden name, but it is still me! Oops, I should update my name in all my emails- after all, it has been 8 years!

https://linktr.ee/Mamabearforrare
Links to my many sources all in one!

Please visit for my published article that illustrates the road to the Jordan’s Syndrome diagnosis. Part 2 can be found within the same article!