LCA Community Conference 2027
July 8, 2027 – July 11, 2027 • Hartford, CT
About the Conference
The Hope in Focus LCA Community Conference is a gathering dedicated to connection, learning, and shared hope within the LCA community. Each gathering, we bring together families, researchers, clinicians, advocates, and individuals living with LCA to exchange knowledge, share lived experiences, and strengthen the global community working toward understanding and treating Leber congenital amaurosis (LCA).
Our goal is to create a space where science and lived experience meet—where progress is shared openly, and where every story contributes to a stronger future.
We’re also excited for what’s ahead—stay tuned for updates and announcements about our next LCA Community Conference in 2027 as we continue growing this important community together.
Tickets
Pricing
LCA Community Adult (ages 16+)
$99 Early Bird ticket
$125 Regular
LCA Community Child (ages 6 to 15)
$60 Early Bird ticket
$75 Regular
Kids 0 to 5 are free to attend the conference. Please include them as a person under the Contact Information section, but no ticket purchase is required.
Family Ticket
Register the entire family for one price! Includes up to five family members, ages six and above.
$350 Early Bird
$425 Regular
Professionals (Industry, Academic, Medical)
$250 Early Bird ticket
$300 Regular
Agenda
| PANELS: | SPEAKERS: |
| Living with an IRD We’re jumping right into it with a panel about mother-son and father-daughter relationships! Moderated by Hope in Focus co-founder and Board Chair Laura Manfre, our panelists include parents of children with an IRD and two young adults living with an IRD. Read the recap about this panel here. | Laura Manfre, Moderator • Lee St. Arnaud, LCA Parent • Elle St. Arnaud, LCA IQCB1/NPHP5, 2025 High School graduate • Leslie Morris, IRD Parent • Jack Morris, RP CRB1, 2025 Brown University graduate |
| Participating in a Clinical Trial This insightful panel will explore what it means to participate in a clinical trial. Hear directly from a clinician overseeing trials and a person living with LCA who has participated in one. Together, they’ll discuss the decision making process, what to expect when participating, and the personal and scientific impact of clinical research. Whether you’re considering a trial or simply curious, this session provides valuable perspectives from both the medical and patient perspectives. Read the recap about this panel here. | Ben Shaberman, Foundation Fighting Blindness, Moderator • Tomas Aleman, MD, University of Pennsylvania • Sarah McCabe, LCA2 RPE65 |
| Gene Therapies for LCA We’ll cover an overview of gene therapy, including the progress of current LCA gene therapies in the pipeline, as well as information about gene therapies that are transitioning from the clinic to approved treatments. Read the recap about this panel here. | Ben Shaberman, Moderator • Kenji Fujita, Atsena Therapeutics • Sarah Tuller, Opus Genetics • Dr. Bikash Pattnaik, University of Wisconsin-Madison |
| Emerging Therapies on the Horizon: Optogenetics, Cell Therapies & ASOs This panel will explore the development of cutting-edge treatments for inherited retinal diseases. Experts will break down the science behind optogenetics, cell therapies, and antisense oligonucleotides (ASOs), highlighting how these innovative approaches aim to preserve or restore vision. Read the recap about this panel here. | Amy Laster, Moderator • Dr. Raj Agrawal, Ray Therapeutics • Michael Schwartz, Sepul Bio • Ben Shaberman, Foundation Fighting Blindness |
| Bringing it All Together Hope in Focus will discuss how you can be involved in the active development of treatments, advocacy, and policy work, as we build an educated and empowered community. | • Courtney Coates, Hope in Focus • Laura Manfre, Hope in Focus |
Speakers
Courtney Coates
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Laura Manfre
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Laura Manfre
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Laura Manfre
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Sponsors
Venue
Hartford Marriott Downtown • Hartford, Connecticut
200 Columbus Blvd
Hartford, Connecticut, USA, 06103
At the crossroads of New England, halfway between Boston and New York City, the Hartford Marriott Downtown is at the intersection of four highways, conveniently situated in downtown Hartford, CT and interconnected to the Connecticut Convention Center.
RESERVATIONS
Book by July 11, 2027 for our special Group Rate:
$229/night 2 Double + tax
FAQ’s
Where will the field trip be on Saturday? On Saturday, children under the age of 15 are invited to join a special field trip while conference sessions take place at the hotel from 9:30 AM to 3:30 PM. Participants will be transported to the Mall of America, where they and their guardians can explore the Crayola Experience and SEA LIFE Aquarium before returning to the hotel. Lunch will be provided.
Once registration is complete and your child has confirmed they would like to attend the field trip, you will receive a follow-up email with a permission slip and additional details.
I have / am a caregiver for someone with an IRD that is not LCA. Should I still attend?
Yes, please do join us! We’ve had families with other IRDs attend in the past and welcome all persons that can benefit from the learning and connections. All of the sessions have content relevant to anyone with an IRD who is interested in learning more about clinical trials, research approaches, and meeting other parents, children and adults living with retinal disease
How can I contact the organizer with any questions?
Send any questions to: info@hopeinfocus.org or call 860-266-6062.
What does the conference cost?
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LCA Community Adult (ages 16 and older)
$99 Early Bird ticket (by April 1)
$125 Regular
LCA Community Child (Ages 6-15)
$60 Early Bird ticket (by April 1)
$75 Regular
Kids 0 to 5 are free
Family Ticket
Up to five people.
$350 Early Bird (by April 1)
$425 Regular
Professionals (Industry, Academic, Medical)
$250 Early Bird ticket
$300 Regular
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What does the conference fee include?
Conference attendee ticket includes:
- Friday night welcome reception/dinner
- Saturday conference sessions and exhibitors
- Friday night dinner, and Saturday breakfast, lunch and dinner
- Field trip for children under 15 during conference sessions on Saturday (optional).
- There is no conference fee for children ages 0 to 5.
Are children welcome at the event?
Yes! This is a family conference and we hope you will bring your family.
For children under 15, we are planning an offsite field trip to a local attraction. The group will be escorted by Hope in Focus volunteers, however one parent/guardian per family is required to attend the field trip with their children.
What’s the refund policy?
Full refund on conference fees with a 7-day advance notice. Hotel refunds are subject to hotel rules and regulations.
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Activities to do in Minneapolis
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Minnesota Children’s Museum
The Minnesota Children’s Museum offers 10 permanent exhibits, including a four-story climber, laser maze, car wash, maker space, pretend town. and a toddler/preschooler gallery. A rotating gallery features new traveling exhibits every few months.
Spanning three floors, the museum provides interactive, hands-on experiences that engage both kids and adults. Families can explore, solve problems, and build life skills together, while kids take the lead in developing confidence, creativity, and communication.
10 West Seventh Street
St. Paul, MN 55102
(651) 225-6000 
Ticket price vary, $3-19 per individual
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Children Theatre Company
Experience a show at the Children’s Theatre Company, known for its high-quality performances that captivate audiences of all ages.
2400 3rd Ave S
Minneapolis, MN 55404
(612) 874-0400 Ticket price vary
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Como Zoo Conservatory
Since its founding over a century ago, Como Park Zoo & Conservatory has become Minnesota’s most visited cultural destination. The conservatory is a stunning showcase of exotic plants, with informative exhibits on their use. The zoo features a seal island, large cat exhibit, diverse aquatic life, primates, birds, African hoofed animals, and a world-class polar bear exhibit.
1225 Estabrook Drive
St. Paul, MN 55103
(651) 487-8200 Free
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Minnehaha Falls – Minnehaha Park
Minnehaha Park is a stunning destination, home to a spectacular 53-foot waterfall. Spanning 170 acres, it offers scenic walking paths, biking, and hiking trails, and plenty of spots to relax and take in the beautiful surroundings.
4801 S Minnehaha Dr
Minneapolis, MN 55417
(612) 230-6400 Free
Community Conference Travel Fund Scholarship
Will you support our travel fund? We’ve opened a special scholarship fund on our website. All donations to this fund help keep conference expenses low and enable us to provide financial assistance for families in need. If you are in need of financial assistance to attend, please send an email to info@hopeinfocus.org.