Wednesday, September 15, 2021

Remembering Kayla Vittek on International Myotonic Dystrophy Awareness Day

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! 

Happy #InternationalMyotonicDystrophyAwarenessDay!

Happy International #MyotonicDystrophy Awareness Day! Join MDF and special guests, including members of the Global Alliance and singer-songwriter Eric Hutchinson, for an hour of celebration and education at 12 PM Pacific! Start raising myotonic dystrophy awareness before the show at https://Inkd.in/gS2iCTB

#MyotonicDystrophy
#InternationalMyotonicDystrophyAwarenessDay
#MyotonicDystrophyAwareness
#MyotonicDystrophyFoundation
#CureForKayla

Read the joint Press Release here and explore more about the Global Alliance members below.

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.

I'm honored to introduce you to Alex! 

0:00 - Intro to Day 2 of MDF Family Conference & Remembering 9/11 - Tanya Stevenson, MDF CEO 
3:20 - Intro to Stories of Inspiration - Tanya Stevenson, MDF CEO
3:50 - 3rd Annual Kayla Vittek Memorial Award for Outstanding Community Advocate - Lisa Harvey-Duren, MDF Founding Executive Director & Kayla's Mom
7:53 - Alexandra LeBoeuf, Artist and Winner of the International DM Awareness Day Logo Contest
21:38 - Julie and Michel LeBeouf, Parents of Alexandra LeBeouf

#MyotonicDystrophy
#InternationalMyotonicDystrophyAwarenessDay
#MyotonicDystrophyAwareness
#MyotonicDystrophyFoundation
#CureForKayla

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. 

We shared a video of Kayla’s life which of course brought me and others to tears but it was also very healing to know that she can still make an impact. We were able to educate over 90 new students in their first week of medical school so they know what to look for as they begin diagnosing patients in the future. The new young doctors grilled us with thought provoking questions and thanked us for sharing Kayla’s story with them. As this disease is genetic they were able to see 3 generations of how this disease affects families. I left the meeting feeling so grateful for having this incredible opportunity. I hope Kayla was looking down on us with pride that we are continuing the work we started together so many years ago. ❤️ 😇