Welcome to Achieve the Impossible Today. This is a blog where I share my journey with Alpha Mannosidosis. So glad you were able to find this blog! This week on the blog, I share about public speaking and the why behind me sharing my story 🙂
Public Speaking??
Public speaking is a common fear found in society today. Who would love to get up in front of a crowd of people and talk about something they are passionate about?
I would most likely be the first person to raise my hand! I absolutely love sharing my story. It is one of my favorite things to do. I never imagined I would be the one person who actually loves public speaking.
But, the question becomes why do I enjoy it so much? I would say that part of my answer would be that I am able to do so. When I share my story I am raising awareness of the rare disease I was born with as well as a story filled with not loosing faith.
Opportunities
I have had quite a few opportunities to share my story. Back in the Spring of 2018, I started sharing my story to students in elementary and middle school. This is where I found that I had a passion for sharing my story with others. I also learned how to tell my story in a simplistic matter.
In 2020 before the world shut down, my family and I had the opportunity to share our story at the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center in New York. This was a new experience for all of us. I had never (I believe) up until this point shared my story along with my parents in front of a crowd of people ranging from doctors to families.
Now fast forward to 2022… I have had the chance to share my story at Chiesi (a pharmaceutical company) along with my parents. When we share our story, we are presenting to a room full of people who understand Alpha Mannosidosis and it always astonishes me. I never thought I would be in a room with people who are passionately working on finding ways to treat this genetic rare disease.
The most recent speaking engagement I had was actually over the internet. I was interviewed by Steven Walkley via Story Corps. Steven Walkley has played a huge impact in the Alpha Mannosidosis world. Years ago, his lab found that bone marrow transplants were able to stop Alpha Mannosidosis from progressing. Thanks to him and his lab, bone marrow transplants have been used to stop Alpha Mannosidosis from progressing. To listen to this interview, please visit here.
The Gift with Sharing
My days have not been promised. Your days have not been promised. No ones days are promised. Every day you wake up is a miracle. God has allowed you to live another day for Him. There have been a few near death experiences that I have encountered. It is always so easy to take this life for granted. Each time I have the opportunity to share my story and what God has done in my life, I am so grateful. Grateful in a sense that I get to tell the story that He has written. The ride hasn’t been easy, but I am so glad that He has been writing this beautiful story.
This is what God the Lord says—the Creator of the heavens, who stretches them out, who spreads out the earth with all that springs from it, who gives breath to its people, and life to those who walk on it
Isaiah 42:5 NIV
Thanks for stopping by and reading this blog! Make sure to follow Achieve the Impossible Today, so you don’t miss a post. I am working on posting more consistently. If you have any prayer requests, feel free to comment them or contact me. As always, He can and He will help you through everything, we just need to seek Him first.
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