our voices

On this episode:

• Annie, Morgan's daughter, was diagnosed about 10 years ago with MPS IIIA, also known as Sanfilippo IIIA. Children with MPS lack an enzyme that breaks down complex sugar molecules, which leads to progressive disease manifestations.
• Morgan shares her perspective on her daughter's initial diagnosis, including the initial encounter with an astute ENT doctor that had concern for an underlying genetic condition that would explain certain physical characteristics and developmental delays.  
• Morgan discusses some of the ways that her daughters MPS IIIA manifested itself before and after her diagnosis at 3 1/2 years old.
• We ask Morgan how she was able to get to a place of radical acceptance and live a joy filled life despite her daughter's Sanfilippo diagnosis.
• Morgan started an interior design company in an effort to find something outside the home for herself, while balancing the need to be home to care for her children. The experience empowered her to help other women find their way in the world of entrepreneurship.
• "I think if I was going to put a label on my life of what the biggest lesson has been through all of this, it has been how to be resilient in the face of extraordinary circumstances." ~ Morgan Motsinger
• Morgan wanted to share her experience and coping skills she learned with others and started a life coaching business.
• Both of Morgan's businesses provide support for special needs families.
• Caregivers seem to put themselves last, but Morgan gives practical advice on how to prioritize self-care and understand it is both important and worth the effort.
• Morgan highlights the importance of finding perspective and embracing personal responsibility and what that has looked like in her life.

Find out more about our guest and her businesses at https://sweetbeecoaching.com/ and https://annikainteriors.com/.

The  National MPS Society exists to cure, support, and advocate for MPS and ML.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you really like the podcast we'd appreciate you telling a friend (maybe even two). 

On this episode:

• In this special Bonus Episode, we wanted to introduce the dedicated individuals that will be hosting the official podcast of the National MPS Society: Our Voices. 
• Terri Klein, Maureen Cote, Stephanie Cozine, and Jason Madison are here to talk about "This Mess Called MPS."
• Terri introduces the National MPS Society and explains what causes MPS and ML.
• These rare diseases collectively impact about 1 in 25,000 live births.
• Maureen shares her story of how her extended family members received an MPS VI diagnosis and when she knew she wanted to be a part of the National MPS Society's Board of Directors.  
• Jason shares his story of being diagnosed as a child and living with MPS II as an adult.
• Stephanie shares how her son was diagnosed with MPS I and how she came to find an inspiring community in the National MPS Society.   
• We discuss the hope that lives in this community and the vision we have for the podcast, Our Voices.  

Mentioned on this episode:

• The National MPS Society Website
• Annual Family Conference
• The Adult Resource Committee

The  National MPS Society exists to cure, support, and advocate for MPS and ML.

If you like Our Voices, visit our website and follow us on social media on Facebook, Instagram, Twitter, and LinkedIn. And if you really like the podcast we'd appreciate you telling a friend (maybe even two). 

Welcome to the National MPS Society: Our Voices podcast. This is such an exciting opportunity to bring the voices of community leaders, experts, and inspiring individuals to you. On your time, at your convenience from wherever you may be, whether that's home, in the hospital room, or even your morning commute. We will be taking a deep dive into life with MPS and ML, exploring topics such as clinical trials, treatment options, inspiring personal stories, addressing mental health and wellness, and so much more. Let's have a conversation about the courage, determination, and hope that brings our community together and leads us to brighter futures.