Our Biggest Takeaways from PPMD 2024

>> YOUR LINK HERE: ___ http://youtube.com/watch?v=biK7p9HH4A4

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: https://www.parentprojectmd.org/ • 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. • ==================== • 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 • ==================== • Hey! If we're meeting for the first time- We are the Bafus family, and we are starting this YouTube 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 • ==================== • 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 YouTube to help spread the message and raise awareness of this rare disease. • You can follow us here 👇 • / bafusfamily • / @bafusfamily • #ppmd #dmd #podcast

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