Susannah is a KIF1A superhero.

  • Hometown: Harlem, New York
  • Age: 8 years 
  • Baseball All-Star
  • Rockstar sister
  • Never, ever, ever quits


Susannah is our sweet, caring and bold little girl. “Suzy” has a severe movement disorder, seizures, and speech and vision challenges. Everyday is hard for Susannah; however, nothing 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, “Suzy 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 punches us in the stomach, Susannah wraps her strong arms around us for a signature “Ginormous Susannah 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.

    1. 3
      marisa danieli on August 15, 2020

      Hi Luke, hope you are well. I am from Australia and watched your daughter on tv and was truly moved by your story. Your daughter is adorable and it is so lovely to watch your love for her along with your wife and medical team. My husband Frank, my son Damon wish her all the very best and we are praying for her every single day. Take care and never stop hoping!

  3. 4
    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.

  4. 5
    Melissa on January 2, 2020

    I only just met this little ray of sunshine yesterday, and can’t begin to express the impact she had in me. It really is one of the most beautiful things in the world to meet people who struggle so greatly, but whose souls are so light!
    It’s these little super heroes that show us Gods love and amazing grace! It’s so incredibly humbling, to see this precious little girl, be the joy that so many of us forget!
    While the gravity of her condition is heart breaking, her smile is the brightest of all! Sending all my love and prayers!
    Sincerely, Melissa.

  5. 6
    Deborah Robinson on April 7, 2020

    Sus – you are the Most Beautiful little Girl – you have a Smile that Lights Up the World – you have
    Determination and You can Conquer anything You want!

    I Love You and Your Family. You and Your brother are So Fortunate to have them and they are Beyond Over the moon for you!

    I Fell in Love with You – An Amazingly Sweet
    Young Miss – Susannah

  6. 7
    Robert R Gotwals on April 8, 2020

    I teach a course in computational biology/bioinformatics to high school students in North Carolina, pretty unusual for a course like that to be taught at a high school level (we are an advanced high school for science and math, so not unusual for us). During class tonight, I’m planning on showing them Susannah’s story (video). I want them to understand why they are learning what they are learning. Susannah, and the two of you (and Dr. Chung) are positively inspirational.

  7. 8
    Juliana on April 10, 2020

    Dear Sus,
    Just saw your history in the documentary and I hope you all be best. I’m a scientist who studies other types of diseases, but your determination together with your family makes us being more confidant on our purpose.
    Thank you very much!

  8. 9
    Judy Stewart on April 22, 2020

    While watching the documentary, each time Susannah’s face was shown it filled my heart with joy and my eyes with tears. She is a very special child.

  9. 10
    Nancy on May 17, 2020

    Dear Susanna,
    My husband and I just watched the documentary and learned a little about you. We are so touched by your story and your joy. You are such a beautiful beautiful child. We are wishing you the very best, and are praying for your well-being and the research that is being done.

  10. 11
    françoise Serralta on May 24, 2020

    Francoise from Paris ( France)
    dear susanna and her parents
    I just watched the heart breaking documentary at the french TV last night and was unable to sleep after discovering the kind of struggle you have to assume every day… I know and experienced very well myself what does mean that kind of everyday challenge to maintain the lifes of my beloved children or grand children… Susannah is a wonderful little girl and i would like to be sure that she can stay like that : smiling, beaming…. how we can help? giving money to research ok but what else? sincerely yours

    1. 12
      Kathryn Atchley on May 27, 2020

      Hi Francoise. Thank you for taking the time to watch The Gene and reach out to us. We can advance our mission by raising funds and awareness. Please share Susannah’s story and/or the KIF1A.ORG page with your network! KIF1A is a drastically underdiagnosed disorder. There could be hundreds of patients living with this disorder in France who do not have the proper diagnosis or connection to the KIF1A community.

      With hope,

  11. 13

    […] KIF1A is the gene causing the neurological disease our daughter was diagnosed with last year. KIF1A is stealing away Susannah’s steps and sight. She’s not alone. So we scream from the mountaintops. We fight to get kids the tests they need, and hope their diagnostic odyssey ends with a genetic report that has KIF1A.ORG listed as a resource for scared parents like us. When families reach out to the foundation, the army of parents and scientists sprinting toward a cure gets larger and stronger. Last year, 25 kids in the world. This year, 100 kids. Closer every single day. […]

  12. 14

    […] Susannah was diagnosed in 2016, she was the only person known to have a rare neurodegenerative disease caused by one specific mutation (P305L) in the KIF1A gene. KIF1A is responsible for making a […]

  13. 15
    dakota on March 31, 2021

    dear Susannah i hope you feel better and i now someone who has it

  14. 16
    madison bedwell on April 9, 2021

    this is a very sad story this made me cry

  15. 17
    Laura Brown on February 22, 2022

    Today in my science class, I had learned about Susannah. I am very sorry for both of you. But look how far she has came! I hope that, eventually, we will find a good cure for kif1a.

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