At the 2019 KAND Family & Scientific Engagement Conference, we asked families affected by KIF1A Associated Neurological Disorder (KAND) to help people understand their challenges and what matters most to them.

The exercise was simple. In the packed auditorium of the Hammer Building at Columbia University Medical Center, we handed out colorful sticky notes and black markers to parents, caregivers and even a few KAND warriors who were able to join us.

We asked KAND families to respond to the following fill-in-the-blank statements:

  • The most challenging aspect of living with KAND is: ______________
  • I want researchers and doctors to know: ________________
  • If treatment can help ______________, that would make a meaningful difference in our daily lives
  • What matters most to me is: _______________

As people finished writing their responses, sticky notes were passed down the aisles of the auditorium, and stuck to the walls for all to see. And now we want to share these fears, frustrations and hope with you.

The most challenging aspect of living with KAND is:

I want researchers and doctors to know:

If treatment can help…

… that would make a meaningful difference in our daily lives

What matters most to me is:

Take a small glimpse into the lives of KAND families by taking a look at the full responses below, or download them here.

KAND families have a significant unmet therapeutic need. Do you want to make a difference? Learn about our bold and achievable Path to Treatment for this generation of KAND patients and support our mission.

Special thanks to Melissa Butcher, Ava’s mom, for creating this resource for us to share.

Comments

  1. 1
    Jacqueline Lanouette on July 5, 2021

    My grand-daughter Lhassa died 3 monthes after the 2019’s Kand congress. My daughter Anouk was at this congress and your presence, your attention helped her a lot to get out of the terrible lonelyness she was in despite of our presence, and our love.
    Next year, when I hope , covid will be behind us, I will help her to assist to the congress.
    A special salutation to Luke that was with us to Lhassa’s celebration.Your beautiful Sue became a part of my life.
    Jacqueline

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