🎙️ Host: Erin Hubbard

🎤 Guest: Sarah Forsman

📅 Release Date: 2/28/2025

🔬 Topic: Life with Alpha-Mannosidosis and the Impact of Early Treatment

Episode Overview

In this episode of These Kids Can’t Wait, host Erin Hubbard speaks with Sarah Forsman, a patient living with Alpha-Mannosidosis. Sarah shares her personal journey, including undergoing a bone marrow transplant at the age of four, and how this early intervention has shaped her life.

From navigating the challenges of a rare disease to advocating for greater awareness, Sarah offers a unique and inspiring perspective on what it means to live with Alpha-Mannosidosis. This conversation sheds light on the realities of managing a lysosomal storage disorder, the importance of early diagnosis and treatment, and the resilience of the rare disease community.

Key Takeaways

✔️ Sarah’s experience with Alpha-Mannosidosis and her early treatment journey

✔️ The impact of a bone marrow transplant on disease progression

✔️ Challenges and triumphs of living with a rare disease

✔️ The importance of research, advocacy, and patient support networks

Resources & Links

🌐 Learn more about The Lost Enzyme Project: https://thelostenzymeproject.org/

📢 Follow us on social media: https://www.linkedin.com/feed/

https://www.instagram.com/thelostenzymeproject/

https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/

📩 Contact us: Email us at admin@thelostenzymeproject.org to get in contact with our producer at alex@thelostenzymeproject.org

Sarah’s Blog: https://achievetheimpossibletoday.com/blog/

ISMRD: https://www.ismrd.org/

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