NCL Translational Scientific Conference November 3 & 4, 2022 in Chicago.

Our Promise to Nicholas Foundation is excited to be working with a small committee to hosting the 7th NCL Translational Scientific Conference at The Westin Lombard Chicago Lombard, 70 Yorktown Center, Lombard, Chicago. The conference will be November 3 & 4, 2022. We are currently working with Dr. Jill Weimer, Dr. David Pearce, Tracy Van Houtan (Noah’s Hope/Bridget Hope), Karen Kahn / Carol Schwimmer (Fore Batten Foundation) and The Lehrman Family.

This intimate Batten Disease conference/workshop is essential to foster good respectful interactions and discussion between these scientist, researchers, clinicians, and pharmaceutical companies. In the past this conference was called a “workshop” allowing an open question and discussion session after a panel of 2-3 speakers spoke on a specific topic of research or findings in their lab.  This brings great safe positive collaboration, open discussion and sharing information between all attendees.  Each conference we are grateful to see this valuable communication between science and research and firsthand seeing this specific rare disease advancing at a much faster pace for all NCL’s then 10 years ago. A cure for Batten disease does not seem so far way.  The covid pandemic may have slowed things down in this rare disease circle but we are excited to get back up running.  The last conference was in 2019 hosted 36 speakers and 75 attendees. Stay tuned for more information and sign up/ sponsorship for this conference is coming soon.

Registration and Sponsorship Link: 

Registration:  $250.00/ person- includes all meals

  • Bronze: $500 (Includes registration for one attendee)
  • Silver: $1,500 (Includes registration for two attendees)
  • Gold: $2,500 (Includes registration for three attendees)
  • Platinum: $5,000 (Includes registration for four attendees and named sponsor of one meal)
  • Diamond: $10,000+ (Includes registration for eight attendees and named sponsor of one meal)
SponsorshipPlease send your check to Our Promise To Nicholas Foundation- PO Box 10106, Bedford, NH 03110
Or you can sponsor by credit card to Our Promise to Nicholas Foundation:

To Register for the conference- Here is the link:

Hotel Reservations:   

The Westin Chicago Lombard  

70 Yorktown Center 

Chicago, IL 60148  

Locked in conference price $149-$159.   

Deadline for hotel Block Reservations is Thursday October 13, 2022 

Here is the hotel link: 



O’Hare International Airport


This airport is 30 minutes to the hotel. There is no shuttle service provided by the hotel. Plan to take a uber or taxi. Cost will be between $38-$50.

Questions: Please contact Heather Dainiak at or 603-785-4249 Or Dr. Jill Weimer

2019 NCL Translational Research Conference for management of NCL’s

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Our Promise to Nicholas
PO Box 10106
Bedford, NH 03110

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