We are here together. Let us support you.
Support Resources
Encouragement and a path to the answers you need to care for yourself and your loved one living with Smith-Lemli-Opitz syndrome.
Empowering families with help and hope.
Family Support
You didn’t expect to be here. We know this feeling.
As you navigate life with Smith-Lemli-Opitz syndrome, take us along.
You won’t regret it.
Our goal is to empower you with credible resources, help from others living the real-life experiences of SLOS, and enable relationships that inspire health and hope in you and your family.
It's never too early to seek help.
Early Intervention
The Smith-Lemli-Opitz Foundation encourages you to seek out services early to intervene and aid your disabled or delayed child affected with SLOS.
Early Intervention services and supports are available to babies and young children with developmental delays and disabilities and their families.
These services and supports may include:
- speech therapy
- physical therapy
- and other types of services based on the needs of the child and family.
These services can have a significant impact on a child’s ability to learn new skills and overcome challenges and can increase success in school and life.
Click the button below to find the Early Intervention programs in your area. At this time, the link describes United States of America and the UK respectively, plus surrounding program areas.
You matter here.
Ways we support you
on Facebook
Smith-Lemli-Opitz Syndrome Foundation: Official Parent Group
A private forum for Parents (only) of individuals with Smith-Lemli-Opitz syndrome to provide support and information for other parents. We review each request to join the group and reserve the right to deny entry into the group.
To be considered a member of this Facebook group:
- You must be a parent or legal guardian of an individual with Smith-Lemli-Opitz syndrome, not an extended family member. Click the button below to learn about opportunities for extended family members to help our mission.
- The family must have already received an SLOS diagnosis (not be in the process of testing).
- The parent or legal guardian must completely answer all the qualifying questions required upon requesting to join the group.
on Facebook
Smith-Lemli-Opitz Syndrome Foundation: Parent Loss Group
This is a safe place to talk and grieve the loss of our precious children. We review each request to join the group and reserve the right to deny entry.
To be considered a member of this Facebook group:
This group is for parents who have lost a child with/to SLOS. While we appreciate others’ interest, the group exists for loss parents only.
by Request
Smith-Lemli-Opitz Family Mentor
Want someone to talk to?
Guidance, direction, and feedback from someone who is living with or familiar with Smith-Lemli-Opitz syndrome?
Members of the Smith-Lemli-Opitz Foundation can Request a Family Mentor after confirming their membership below.
Not a member?
Below, you will have the opportunity to become a member and be eligible to request a Family Mentor.
Request a Family Mentor
Eligibility
All registered members of the Smith-Lemli-Opitz Foundation are eligible to request a Family Mentor. Upon responding “Yes” to the question below to confirm your membership, a Request a Family Mentor Form will appear for you to complete and submit to the Foundation for consideration.
If you are not a registered member of the Smith-Lemli-Opitz Foundation, click the button below and become a member. Return here to confirm your membership and request a Family Mentor.
Membership Confirmation
SLOS Conferences
Friday, June 20th - Saturday, June 21st, 2025 • Boston, Massachusetts, USA •
The Smith-Lemli-Opitz Foundation sponsors regular biennial national scientific and family medical conferences where physicians, scientists, parents, siblings, and caregivers can learn more from each other and collaborate.
Register for the conference today!
The first 28 families to • register • pay for tickets • AND • reserve a room in the room block
will qualify to receive a Harper Wolinetz Conference Travel Scholarship
worth $250 OFF their room charges.
Thank you to the Carrie and Lou Wolinetz Family who fund these amazing travel scholarships
in memory of their daughter, Harper.
Family Medical Conference
Details
- Friday, June 20th - Saturday, June 21st, 2025
- Embassy Suites by Hilton Boston at Logan Airport
- Address
207 Porter Street
Boston, MA 02128 USA
Steps to Register
• Click the conference registration button. It will take you to a registration page on the Eventbrite website.
• Click the “Get Tickets” button and enter the number of tickets (for the conference attendees).
• Click the “Check out” button, enter your information on the Eventbrite registration form and submit your payment.
• If you’d like to stay at the • Embassy Suites by Hilton Boston at Logan Airport • follow the directions below.
Special discounted room pricing in a block of rooms specially reserved for those attending the conference.
If you’d like to stay at the Embassy Suites by Hilton Boston at Logan Airport, click the button below to reserve a room in the conference block by May 28th, 2025 (or until all the block rooms are sold out).
Those needing a special ADA room should call Danielle Iworsley directly: 1-617-933-5108
Call to Reserve a Room
If you’d like to stay at the Embassy Suites by Hilton Boston at Logan Airport reserve a room in the conference block of rooms by May 28th, 2025.
Call +1 617-567-5000
Group Name: Smith-Lemli-Opitz
Reference Group Code: SLO
If you need a special ADA room, you should call Danielle Iworsley directly: 1-617-933-5108
Testimonial
What Our Members Say
Fueling life with SLOS
Nutrition
Individuals with Smith-Lemli-Opitz syndrome have specific nutritional needs. Knowing and responding to these needs improves and maintains the health of individuals with SLOS.
Watch the video on the right and listen to a clinical Research Dietitian describe these needs.
Supplementing Cholesterol with meals
Cookbook
A group of bionutritional professionals published a cookbook of recipes to help those affected by Smith-Lemli-Opitz. These recipes help caregivers supplement the cholesterol needed by those with SLOS in meals prepared at home.
Giving the body what it needs
Cholesterol Supplementation
Researchers continue to work on improved treatments and therapies for Smith-Lemli-Opitz syndrome.
Listen to Dr. Forbes D. Porter discuss cholesterol supplementation and other therapies in the video on the right.
