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