In honor of International Myotonic Dystrophy Awareness Day today, September 15, 2021, I'm posting a slideshow of my daughter Kayla's life. We miss Kayla every minute of every day. I'm working hard to help in the fight to find treatments for myotonic dystrophy so that Kayla's friends and family can have a full and healthy life. I'm so proud of my little girl for never saying no to my constant push to advocate for this disease. She was my "can do" girl and I'm so incredibly honored to be her mom. See you in the light of the moon Kayla!
Wednesday, September 15, 2021
Happy #InternationalMyotonicDystrophyAwarenessDay!
Sunday, September 12, 2021
3rd Annual Kayla Vittek Memorial Award for Outstanding Community Advocate Goes To...
Let me introduce you Alexandra LeBoeuf, the winner of the 3rd Annual Kayla Vittek Memorial Award for Outstanding Community Advocate for her work in designing the logo for our 1st International Myotonic Dystrophy Awareness Day today, September 15, 2021.
Watch this brave and inspiring young lady living with juvenile-onset myotonic dystrophy share her story. She's an inspiration to the community of families and researchers working around the world to treat and cure myotonic dystrophy.
3:20 - Intro to Stories of Inspiration - Tanya Stevenson, MDF CEO
I'm honored to introduce you to Alex!
International Myotonic Dystrophy Awareness Day Logo created by Alexandra LeBeouf |
Thursday, August 26, 2021
Celebrating Our 9th Year of Training the Stanford Medical Students about Myotonic Dystrophy
This morning, my mom (Jane), my dad (Pharis), Paul and I met with the first year medical students from Stanford University for the 9th year in a row. Every year we all look forward to this day and Kayla always loved meeting the students as we helped them to understand the impacts that myotonic dystrophy can have on a family. This year was over Zoom so it was definitely different but it was still an incredible experience.