Our Biggest Takeaways from PPMD 2024

The PPMD Conference is over, and this is an honest conversation where we unpack our biggest takeaways from the 3-day PPMD conference in Orlando. This episode is more like a podcast where we delve into inspiring sessions, a special family encounter, exciting research updates, and practical tips for managing Mason and Jack's DMD. This episode is filled with raw emotions, valuable insights, and advice for families on a similar journey.
If you would like to learn more about ‪@ParentProjectMD‬ and join us in Vegas, June 2025, head over to: www.parentproj...
Disclaimer: This is not medical advice. These videos simply serve as documentation surrounding this treatment and decisions we've made, as parents, to potentially better the lives of our children.
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What's Elevidys? Elevidys is a gene therapy from Sarepta. It's the first gene therapy FDA approved for pediatric patients (4-5 years old) with Duchenne muscular dystrophy.
Sarepta has also produced Exondys 51.
Mason received his Sarepta (Elevidys) gene therapy at Seattle Children's Hospital
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Hey! If we're meeting for the first time- We are the Bafus family, and we are starting this RUclips channel to give hope, document our journey, and to shine light on duchenne muscular dystrophy.
For our first 7 days, we posted one video a day, documenting Mason's $3.2 million, once in a lifetime gene therapy.
You can watch that here ➡: • Mason's Gene Therapy
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We are typically private people, just like you, but this disease has forced us more into the public, and that's ok. We've learned that this is not a disease that anyone can fight alone. So we decided to take to RUclips to help spread the message and raise awareness of this rare disease.
You can follow us here 👇
/ bafusfamily
/ @bafusfamily
#ppmd #dmd #podcast