2025 Smith-Lemli-Opitz Syndrome Family Medical Conference - Boston, MA

Please join us this summer for the 2025 SLOS Family Medical Conference in beautiful Boston, Massachusetts (USA). Don't miss this opportunity to learn about SLOS, socialize with other families, and strengthen the bonds that make our SLOS community so strong.

When: June 20, 2025 - June 21, 2025 (Friday and Saturday)

Speaker Sessions: 9:00 a.m. – 5:00 p.m. each day (Eastern Day Time)

Location (Hotel): Embassy Suites by Hilton – Boston at Logan Airport

Address: 207 Porter St, Boston, MA 02128

Shuttle: 24-hour free shuttle to airport

Discounted Parking: $30 day; $40 day + overnight

Refund policy: Refunds are possible up to 90 days before the event; Eventbrite's fee is nonrefundable.

Video: https://www.facebook.com/embassysuitesbostonloganairport/videos/867023220671782
The SLO Foundation's biennial family conference brings together a broad spectrum of our diverse and dynamic community, including individuals with SLOS, their families, caregivers, medical and therapeutic professionals, volunteers, and SLOS researchers. The conference provides an opportunity to learn more about Smith-Lemli-Opitz syndrome (SLOS), treatment and management options, current SLOS research, and opportunities to learn about and enroll in ongoing SLOS research studies. The conference will also introduce you to the top SLOS specialists in the world and give you the chance to ask specific questions about your child's issues and challenges in a relaxed atmosphere.

Adult & Teen: $150.00

Youth (2 – 12 yrs.): $75.00

Infant/Toddler (under 2yrs): $0.00

Zoom Only (not attending in-person): $0.00

Registration fee includes:

• Two-day conference speaker sessions and materials

• Meals: Evening Reception (Thursday); Lunches (Friday and Saturday); Made-to-Order Buffet Breakfasts (for Embassy Suites hotel guests only); Pizza & Pub Quiz Dinner (Friday) - a fun event with SLOS families and physician attendees hosted by our very own Dr. Andy Jones! You won't want to miss this event!

DAY 1 - Friday, June 20
9 a.m. - 5 p.m. (Eastern Day Time)
* Welcome & Introductions
* All About Smith-Lemli-Opitz Syndrome
* Reading SLOS Test and Lab Results
* The Forms and Function of Cholesterol
* Secondary Health Conditions & Major Medical Complications in SLOS
* National Institutes of Health - Natural History Study
* CHOLBAM - Cholic Acid Treatments in Patients
Session 1 – Physician Update
Session 2 – Parent Panel
* Managing SLOS Dental & Orthodontic Care
* SLOS Dental Surgeries & Hospital Care
* Parent Emotional Support & Mindfulness
* Special Session
* PIZZA DINNER and Pub Quiz with Andy Jones

DAY 2
Saturday, June 21
9 a.m. - 5 p.m. (Eastern Day Time)
* Welcome and Introductions
* KEYNOTE - Improving the Quality of Care for Patients with SLOS
* SLOS Questions & Physician Discussion Panel
* Puberty and Sexuality in SLOS
* SLOS Behaviors and Medications
* Special Session
* Smith-Lemli-Opitz Foundation
* Educating Your Child’s School about SLOS; Managing SLOS Behaviors in a School Setting; Coordinating an SLOS Behavioral and Medic*tion Plan into an IEP

EMBASSY SUITES BY HILTON – LOGAN INT’L AIRPORT
HOTEL ROOM BLOCK

Cost - $249.00 per night (King) (plus taxes)
Cost - $299.00 per night (2 Double) (plus taxes)

LINK TO BOOK A ROOM IN THE BLOCK:

https://www.hilton.com/en/attend-my-event/bosapes-slo-85df4107-ef11-4feb-b30c-1af259b2c342/

BLOCK DEADLINE - May 28, 2025
(or until all of the block rooms are sold out)
ACCESSIBILITY/ACCOMODATIONS - For families needing a room with special accessibility/accomodations, please call the following phone number: 1-617-933-5105 and speak with Lohany Silva. Tell her you are with the Smith-Lemli-Opitz Foundation conference and she can give you options for some of the ADA rooms. For a full list of possible accomodations, please see "Accessible Features" at: https://www.hilton.com/en/hotels/bosapes-embassy-suites-boston-at-logan-airport/hotel-info/

The first (25) SLOS families who BOTH register for the conference AND book their room within the SLO Foundation room block will qualify to receive a $200 lodging scholarship. Scholarships are available only to guests staying more than one night within our room block at the Embassy Suites - Logan International Airport. Those qualifying will receive (up to) a $200.00 credit to be applied to their bill before checkout after their 2nd night stay.

Please note that travel scholarships may NOT be used at other hotels or outside of the Embassy Suites -Logan International Airport Hotel room block or for other incidental travel costs and are not redeemable for cash. Only one travel scholarship may be awarded for each SLOS family (including travel companions staying in other rooms).

Free WiFi in all rooms

Free made-to-order breakfast

Free shuttle - Boston Logan Int'l Airport (call to request)

Complimentary evening reception

On-site restaurant

Room service

Indoor pool

Fitness center

Some connecting rooms

Streaming TV

Business center

Discounted parking

Smoke-free rooms (100% non smoking)

Accessibility features:
https://www.hilton.com/en/hotels/bosapes-embassy-suites-boston-at-logan-airport/hotel-info/

Host or Publisher Gretchen Noah