Susannah is a KIF1A superhero.

  • Hometown: Harlem, New York
  • Age: 5 years 
  • Baseball All-Star
  • Rockstar sister
  • Never quits


Susannah is our sweet, caring and bold little girl. “Sus” has a significant movement disorder, seizures, and speech and vision challenges; none, however, can stop her from charming the world with her beautiful smile and sincere devotion to friends and family. Like her best friend/big brother says, “Sus just gets around differently.”
The kindest soul in the world, Susannah knows exactly when to give a friend a high five to brighten their day. Just when life starts to get us down, she wraps her strong arms around us for a signature “Ginormous Sus Hug.” Those hugs are perfect. Susannah inspires us to live life in the moment, to jump in the water, sing at the top of our lungs and laugh until it hurts.
It is terrifying to watch KIF1A steal away her steps, words and thoughts. Thank goodness she’s the toughest gal in the league. Thank goodness Susannah is our superhero.



  1. 1
    Susan Jackson, grandmother of Susannah Rosen on May 18, 2019

    Susannah is my beloved granddaughter. Whenever I am with her, she teaches me something important. A few of these things are:
    1) Always look at a child directly in the eyes when he/she is talking to you, and don’t try to add your own ideas. What that child is telling you is pure and important. As friends or family members, we need to listen attentively, and then respond in an honest and positive fashion.

    2)When questioning a child, wait patiently for the answer. Don’t try to jumpstart a response or answer for her.

    3) Enter your child’s world and play the games she suggests. Laugh with her if the game is funny, and you will be amazed at what a wonderful time you will have together.

    4) live fully in the moment when you are with the chid you love.

  2. 2
    Eric on May 30, 2019


    So inspiring so heart wrenching . Winston Churchill said: “never, never ,ever give up “. Harriet Beecher Stowe “When you have reached the end of your rope, when it seems as if you cannot go on another moment, hold on, as that is when the tide will turn”. Be strong, hold on, never ever give up on your dreams, hopes, or the ones you love. I’m thinking of you, wishing you love, peace and understanding. Eric.

  3. 3
    Glo salick on May 31, 2019

    Luke, we knew you when you were a little boy, and your family and ours had many great times together. Now you and sally have your own children— you both are doing wonderful work for your beautiful Susannah. I see your father’s face in your face — he saved our daughter’s life, and you continue the heroic work to fight childhood disease. Your video breaks our hearts—stay so strong and brave to unlock the secrets of this awful genetic mutation. We send our love to all of you.

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