#322 Susannah’s Nano-Rare Journey: 2 Years of Treatment and Triumph

#322 Susannah’s Nano-Rare Journey: 2 Years of Treatment and Triumph

Two years of treatment—two years of strength, courage, and blazing a trail for other nano-rare patients!

In this special episode drop, we’re revisiting the inspiring journey of Susannah, whose story was the first ever shared on the Patient Empowerment Program podcast. Now, two years later, Susannah’s father, Luke Rosen, and her physician, Dr. Jennifer Bain, join us to share her remarkable progress since beginning regular treatments. They highlight incredible improvements in Susannah’s motor skills, cognition, energy, and overall quality of life.

This episode originally aired on the Patient Empowerment Program podcast, where our host, Kira Dineen, serves as a producer. You might even recognize her voice in some of the promos and ads for the show!

For long-time listeners of DNA Today, you might recall that we shared the pilot episode of the Patient Empowerment Program podcast featuring Susannah’s story back in Episode 186. Now, we’re thrilled to bring you this heartwarming update to see how far Susannah has come and to celebrate her incredible resilience.

Be sure to check out more episodes of the Patient Empowerment Program podcast, which focuses on empowering nano-rare patients and their families. Search for the podcast in your favorite podcast app or visit its listing on n-Lorem’s website.

Get ready, genetic nerds—another brand-new episode of DNA Today drops this Friday! You can always count on us to deliver fresh content every Friday.

While you wait, why not dive into our library of over 300 episodes? Binge them all on Apple Podcasts, Spotify, our website, or wherever you love to listen—just search “DNA Today.”

Prefer watching? We’ve got you covered! For the past four years, we’ve been recording episodes with video, including some filmed at the iconic NBC Universal Stamford Studios. Check them out on our YouTube channel!

DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead is Kajal Patel. Our Outreach Intern is Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC.

See what else we are up to on Instagram, X (Twitter), BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to info@DNAtoday.com.

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Avsnitt(412)

#411 Mock Cancer Genetic Counseling Session: Colon Cancer and Lynch Syndrome

#411 Mock Cancer Genetic Counseling Session: Colon Cancer and Lynch Syndrome

What happens during genetic counseling after someone develops colon cancer at a young age and their tumor testing raises concern for Lynch syndrome? This is the eighth installment in our Mock Genetic ...

11 Sep 30min

#410 Gypsy Rose Blanchard’s 1q21.1 Microdeletion: What Does It Explain?

#410 Gypsy Rose Blanchard’s 1q21.1 Microdeletion: What Does It Explain?

This episode drop from the PRETEND podcast series “The Gypsy Rose Obsession” features Kira Dineen explaining what Gypsy Rose Blanchard’s genetic test result may, and may not, mean. Gypsy Rose Blanchar...

4 Sep 43min

#409 How DNA Testing Exposed the Dark History of American Adoption

#409 How DNA Testing Exposed the Dark History of American Adoption

What happens when stigma, secrecy, and institutional power separate a mother from her child, and prevent an adoptee from accessing his own identity and medical history for decades? This week, we are s...

28 Aug 43min

#408 Low ALP, Fractures, and Early Tooth Loss Point to Hypophosphatasia

#408 Low ALP, Fractures, and Early Tooth Loss Point to Hypophosphatasia

Hypophosphatasia (HPP) can present very differently from one person to the next, from life-threatening complications in infancy to fractures, chronic pain, muscle weakness, or early tooth loss later i...

21 Aug 37min

#407 NFL and Kansas City Chiefs Star Art Still on the Missed Signs of Hereditary Amyloidosis

#407 NFL and Kansas City Chiefs Star Art Still on the Missed Signs of Hereditary Amyloidosis

What happens when the symptoms of a genetic condition look like the lasting effects of a professional football career? Former NFL defensive end and Kansas City Chiefs star Art Still spent decades attr...

14 Aug 39min

#406 Mock Teratogen Genetic Counseling Session: Ozempic, Zoloft, Xanax, and Metformin

#406 Mock Teratogen Genetic Counseling Session: Ozempic, Zoloft, Xanax, and Metformin

This is our seventh installment in our Mock Genetic Counseling Session Series! In this episode, genetic counselor and teratogen information specialist Sharon Voyer Lavigne and student Edith Atwerebour...

7 Aug 30min

#405 Why Insurance Denies Genetic Testing, and How to Navigate Coverage

#405 Why Insurance Denies Genetic Testing, and How to Navigate Coverage

Genetic testing can change the course of a patient’s care, but accessing the right test is not always straightforward. Behind the scenes, insurance coverage decisions, documentation requirements, prio...

31 Juli 34min

#404 Male Breast Cancer with X-Men Actor and Former Pro Wrestler Tyler Mane

#404 Male Breast Cancer with X-Men Actor and Former Pro Wrestler Tyler Mane

What happens when someone known for strength, stature, and intimidating roles faces a diagnosis most people do not associate with men?   Tyler Mane is known for playing Sabretooth in X-Men and Deadpoo...

24 Juli 21min

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