October 2023 Highlights

Fully Inclusive and Universally Accessible Parks!

Gunnar, a KAND warrior, and his family recently helped secure a $3 million grant from the Senate to help build Wisconsin’s first universally accessible park! Raena, Gunnar’s mom, shared his story at a Senate hearing and explained why typical parks limit Gunnar’s ability to access physical activities, play, and recreation like other kids. The Moss Universal Park project was spearheaded by The Ability Center in Wauwatosa, WI, whose mission is to provide people impacted by disabilities with a daily opportunity to be fit, active, healthy, and to play. Raena, amazing job advocating for your son’s rights and inclusion in all aspects of life! Enjoy the playground Gunnar!~

Australian KAND Community meets with MCRI

This summer our KAND Australian families visited MCRI Murdoch Children’s Research Institute in Melbourne, Australia. “Dr Simranpreet Kaur, an early career researcher at MCRI, is leading Australia’s first KAND research program in collaboration with national and international collaborators including KIF1A.org to accelerate research into KAND.” Thanks Dr. Simran Kaur for organizing this visit and Zoom call with other Australian families!

Organizational Update Meeting

Oct 19th @ 3pm ET (1900 UTC); Register Here.

Join us to hear an update from KIF1A.ORG’s Director, Angie Fuller, and learn about the progress being made behind the scenes and how you can get involved in our future organizational needs. The meeting will be recorded and shared for later viewing.

October 28th Fundraiser:

Boston Hockey Tournament

• OCT 28th @ 2pm KIF1A.ORG is partnering with Boston Children’s Hospital (BCH), in Boston, to host a hockey event like no other!

• Fundraising at this event will go directly to BCH’s KIF1A programs and Chung Lab.

• Luke Rosen will take the ice with other regional first responder hockey teams for a day full of hockey games, family fun, and fundraising!

• Register here!

If you can’t join in person, you can still donate to our programs at BCH through our special link on BCH’s website.

OUR GOAL IS $15,000 to support KIF1A Research Programs at Boston Children’s Hospital and continue the amazing work Dr. Chung and her team have done so far! The puck drops here!

Patient Care Resources

• Dr. Dylan Verden, KIF1A.ORG’s CSO, is creating specific KAND symptom resources for our patient community in alignment with recommendations for our specialists at Columbia University Medical Center. Resources pages will be available in the near future.
• Topics of priority include spasticity, epilepsy, and vision loss.
• Is there a symptom you want to learn more about? Submit your request to Dylan@kif1a.org

Recent Conferences attended by KIF1A.ORG representatives

• AGBT – Advances in Genome Biology and Technology Precision Health 2023
• 2023 RARE Advocacy Summit by Global Genes in San Diego, CA
• 2023 Science in Society Annual Meeting by CZI (Chan Zuckerberg Initiative) in Los Angeles, CA
• New York Bio Annual Meeting in New York
• Nano-rare Patient Colloquium by n-Lorem in Cambridge, Massachusetts
• Rare Diseases & Orphan Products Breakthrough Summit by NORD in Washington D.C.

Science Saturday recaps

• The Holzbaur Lab, including Dr. Jayne Aiken, investigated how the Parkinson’s-associated LRRK2 protein regulates KIF1A cargo binding.
• The Vallee Lab, including Dr. Aditi Falnikar, investigated how a protein called Nup153 and KIF1A regulate cell migration during embryonic brain development.
• Researchers at Drexel University studied how microtubule-bound septins change the road conditions for motor proteins, including KIF1A.
• Genetic testing projects across the world identified KIF1A mutations in subsets of patients with hereditary spastic paraplegia (HSP) or hereditary sensory and autonomic neuropathy (HSAN).