Dear KAND Community,
As we step into a new year, I want to extend heartfelt wishes to each and every one of you. May this year bring hope, strength, and breakthroughs on our collective journey.
In the face of challenges, your resilience shines brightly, inspiring us all. Let the new year be filled with moments of joy, progress, and community support. Together, we can continue to raise awareness and work towards a brighter future for all KAND warriors.
Here’s to a year of courage, breakthroughs, and unwavering support. Happy New Year!
Angie Fuller, Director KIF1A.ORG
Bidding Sean Calamia a Farewell!
As you embark on a new chapter in your journey, we want to express our heartfelt gratitude for your unwavering dedication and contributions to KIF1A.ORG and our warriors. Your tireless efforts have made a profound impact on our community, and your passion for supporting KAND patients and families has truly touched our hearts. 🧡
While bidding farewell is bittersweet, we are excited to welcome Jessica Waxler and Alejandra Rincon Bolivar as your successors. Their expertise and commitment to our cause align seamlessly with our mission, and we are confident that they will continue the incredible work you have initiated. The legacy you leave behind will be a guiding light as we move forward, striving to make a difference in the lives of those affected by KAND and other rare diseases.
Thank you, Sean, for your outstanding service. We wish you the very best in all your future endeavors and hope to cross paths again in the near future!
We are working on the official annual report and will share it once completed!
Snapshot of 2023:
- We hosted our 4 day, in person 2023 KAND Family and Scientific Engagement Conference with over 30 families and 50 researchers, scientists, academic students, clinicians, and industry partners in attendance totaling around 150 people each day!
- 170+ KAND patients have enrolled in the ASCEND Online Natural History Study and 60+ KAND patients have enrolled in KOALA In-Person Natural History Study
- Preliminary results from the first KAND patient treated with ASO therapy looks promising!
- Opened enrollment for an International KAND Speech Study.
- Created a resource page for families about Epilepsy in KAND
- Organizational updates included: a new director and board members, updated by-laws, transitioned to a third party accounting firm, transitioned to a permanent org address in New York City
- Initiated a KIF1A.ORG Policy and Advocacy Committee, Fundraising Committee, and International Ambassador Program
- Added 68 patients with KIF1A variants to our org data registry this year
- Sadly, our community also lost a number of precious warriors in 2023 including Lyon Hallin (2), Joshua Marcotte (26), and Heidi Munoz (24). We remember these angels and those that have come before them, and dedicate our relentless work in their honor.
- Stay tuned for the full annual report coming soon!
Wondering what to look for when you meet with your ophthalmologist? We’ve compiled a printable cheat sheet of potential visual symptoms in KAND, signs to look out for, and relevant tests, with guidance from Dr. Aliaa Abdelhakim, MD, lead ophthalmologist in the KOALA clinical endpoint study.
International KAND Speech Study now ENROLLING! GOAL of 50 patients!
Our Research Network Partners at MCRI in Australia are enrolling an International KAND Speech Study and your involvement is critical to helping our community understand more about the effects of KAND on speech and communication.
Download and read the research flyer for more details and scan the QR code to fill out the interest form. Lottie Morison will reply back with next steps!
Calling all KAND Families!
- We are seeking pictures and videos for our social media campaigns in 2024 ~
- First, we would like to create a video compilation of many dozens of KAND warriors dancing/singing/moving however they can to “Fight Song” by Rachel Platten. We will use this during our KIF1A Day campaign in April. Here is a link to the song on YouTube. Please send your videos to email@example.com
- Second, please consider filling out the social media submission for either (or both!):
- #WarriorWednesday: to celebrate a KAND patient, often showcasing a recent accomplishment or joyful moment.
- #ThisIsKIF1A: to showcase the struggles of KAND and provide a real-life snapshot of how KAND affects patients and families.
- Researchers from the Vallee Lab have uncovered roles for KIF1A in the creation of neurons during embryonic development, giving us insight into KIF1A’s roles across the lifetime.
- Researchers in Shanghai, China have identified 6 patients with KIF1A mutations, including 3 that haven’t been reported before.
Whatever role you play in our community, we need you. Thank you for all that you do to help us realize our mission for KIF1A superheroes everywhere.