2025 Smith-Lemli-Opitz Syndrome Family Medical Conference - Boston, MA | 207 Porter St
Jun 20, 2025 (UTC-4)
Boston
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
Hotel Phone:
1-617-567-5000
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 are 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 as well as 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.
Family Conference Registration Fees:
Adult and 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 guests staying at the Embassy Suites Hotel)
; Pizza and 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!
2025 SLOS Conference Sessions
(All sessions are located at the Embassy Suites Hotel - Boston Logan Airport location.)
DAY 1
Friday, June 20
(Eastern Day Time)
9:00 am - Welcome and Introductions
Smith-Lemli-Opitz Foundation
9:15 am - Smith-Lemli-Opitz Syndrome
Denny Porter, MD, National Institutes of Health (Bethesda, MD)
9:45 am - Reading SLOS Test and Lab Results
Denny Porter, MD, National Institutes of Health (Bethesda, MD)
10:00 am - Forms and Function of Cholesterol
Ellen Elias, MD, FAAP, FACMG, Children’s Hospital Colorado (Denver, CO)
10:40 am - Photosensitivity and Protecting SLOS Skin
William Rizzo, MD, University of Nebraska Medical Center (Omaha, NE)
11:10 am - SLOS Natural History Study – Overview and Preliminary Results of Neurodevelopmental Assessments
Samar Rahhal, MD, National Institutes of Health (Bethesda, MD)
Audrey Thurm, PhD, National Institutes of Mental Health (Bethesda, MD)
12:10 pm - My Child Has SLOS: What Are Potential Health Complications to Be Aware Of?
Robert Steiner, MD, University of Wisconsin School of Medicine and Public Health (Madison, WI)
1:00 pm - LUNCH
2:10 pm - CHOLBAM -
Use of Cholic Acid in SLOS
Session 1
– Joseph Ray, MD, Division Director of Medical Genetics and Metabolism, University of Texas
Medical Branch
Session 2
– SLOS Parents Taylor and James Weaver; Edwin Clay Ferren, MD, Atrium Health Pediatrics/Medical Genetics
3:30 pm - Managing SLOS Dental Visits, Orthodontic Care, and Dental Surgeries
Isabelle Chase, DDS, Boston Children’s Hospital (Boston, MA); Harvard School of Dental Medicine (Cambridge, MA)
4:40 pm - Mindful Moments: Finding Calm with Full Hands and a Full Heart
Lauren Cramer Finnerty, MSW, LICSW, PMH-C; Brittany Gummere, MSW,
Boston Children’s Hospital (Boston, MA)
5:45 pm - Dinner and Pub Quiz
Quizmaster Dr. Andy Jones
_________________________________________________________________
DAY 2
Saturday, June 21
(Eastern Day Time)
9:00 am -
SLO Foundation - Program Updates and Endowments
Smith-Lemli-Opitz Foundation
9:20 am -
KEYNOTE SPEAKER
Improving the Quality of Care for Patients with Smith-Lemli-Opitz Syndrome
Amy Kritzer, MD, Boston Children’s Hospital (Boston, MA); Harvard Medical School (Cambridge, MA)
10:20 am -
Tribute to Dr. John Opitz (8/15/1935 - 8/31/2023)
Malgorzata Nowaczyk, MD, (Hamilton, Ontario, CAN)
10:55 am - SLOS Questions and Physician Discus
sion
Panel
SLOF Medical & Scientific Advisory Board and Dr. Mira Irons
12:25 pm - Critical Importance of Vaccinations in Pediatric SLOS Patients
Ellen Elias, MD, FAAP, FACMG, Children’s Hospital Colorado (Denver, CO)
2:10 pm - Managing SLOS Behaviors in a School Setting
Julia O'Connor, PhD (Baltimore, MD)
2:40 pm - SLOS Behaviors and Medications
Elaine Tierney, MD, Kennedy Krieger Institute; Johns Hopkins Univ. School of Medicine (Baltimore, MD)
3:15 pm - Diagnosis and Management of Sleep Disorders in People with Smith-Lemli-Opitz Syndrome
Marc Daou, MD, Sleep Fellow at BIDMC/Harvard Medical School (Cambridge, MA)
4:10 pm -
Hearing in Smith-Lemli-Opitz Syndrome: Characterization, Challenges, and
Care
Christopher Zalewski, PhD, National Institutes of Health (Bethesda, MD)
4:45 pm - Puberty and Sexuality in SLOS
Ellen Elias, MD, FAAP, FACMG, Children’s Hospital Colorado (Denver, CO)
5:15 pm - Closing Remarks and Final Door Prizes
Questions about the conference schedule please email info@smithlemliopitz.org.
DON'T FORGET TO BOOK YOUR ROOM!
EMBASSY SUITES BY HILTON
LOGAN INT’L AIRPORT
HOTEL ROOM BLOCK
-
SPECIAL
DISCOUNTED
RATES
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: (code - SLO; tell them it is for the "Smith-Lemli-Opitz group")
https://www.hilton.com/en/attend-my-event/bosapes-slo-85df4107-ef11-4feb-b30c-1af259b2c342/
BLOCK DEADLINE -
May 28, 2025
Discounted prices are good through 5/28/2025 or until all of the block rooms are sold out. Book early to take advantage of these great room prices!
DO YOU NEED HELP BOOKING YOUR ROOM or a room with ACCESSIBILITY/ACCOMODATIONS -
For families needing a room with special accessibility/accomodations, please call the following individual:
Danielle Iworsley
Director of Sales at Embassy Suites
danielle.iworsley@hilton.com
(617) 933-5108
Tell Danielle that you are with the Smith-Lemli-Opitz Foundation Conference and she can give you options for available 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/
Harper Wolinetz Conference Travel Scholarship
The first 28 families that both register/pay for tickets AND reserve their room in the SLO Foundation's ROOM BLOCK will qualify to receive a
Harper Wolinetz Conference Travel 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 $250.00 credit to be applied to their bill before checkout after their 2nd night stay.
Thank you to the Carrie and Lou Wolinetz Family who fund these amazing travel scholarships in memory of their daughter, Harper
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).
Amenities:
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/
Information Source: Gretchen Noah | eventbrite