Dear KAND Community ~
Our team has been busy with a number of different projects we’d like to share with you and some important community updates you need to know about. Thanks for reading and staying connected!
KAND Community Member updates
Unfortunately, our KAND community lost another warrior last month to this horrible disease. Lyon Hallin was just 19 months old and lived in Sweden with his parents and older sister. He passed away Sept 19th and his funeral was Oct 11th. Our whole community is grieving the loss of this precious boy’s life and mourning with his family. Please keep them in your thoughts and prayers. Rest In Peace Lyon.
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.
NEW this month:
“Welcome to KIF1A.ORG”
October 25th @ 1pm ET(1700 UTC); Register here!
This meeting is for anyone newly diagnosed and searching for answers about: “What is KIF1A, KAND, and how can the organization help me?”
Agenda: Review the basics of KAND, the history of the organization, studies open for patient enrollment, and discuss care recommendations for newly diagnosed patients, followed by a Q & A and open discussion.
Our goal is to offer this meeting monthly to all newly diagnosed families to help orient them to KAND and KIF1A.ORG and get them connected to the resources and support they are desperately looking for.
September 28th Community Call Video:
Epilepsy in KAND
- Dr. Tristan Sands, from Columbia University Medical Center, discussed Epilepsy in KAND September 28th.
- Over 30 caregivers, scientists, researchers, and clinicians attended this call!
- Meeting recorded here
- Dr Verden is working on an epilepsy resource page for patients and caregivers. Stay tunned for when that is published on our site.
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!
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.
KAND Science and Research Updates
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).
KAND Natural History Study In #s
- 177 patients are enrolled in part 1: ASCEND online
- 60 patients are enrolled in part 2: KOALA in-person
We need more patients enrolled!!
The more patient data we have, the more we understand KAND.
Each warrior is unique so make sure your data is included in the research.
By participating in this study you are immediately joining the fight to discover treatment and a cure.
Email Angie@kif1a.org with questions
2023 KAND Conference Recap
- Over 150 scientists, researchers, family members, and patients from all over the world joined us at the conference in NYC!
- 30 patients participated in the KOALA study during the conference.
- ASO treatment updates were shared by Dr. Chung and the Rosen Family.
- Conference videos here!
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.