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
The Official Smith-Lemli-Opitz Syndrome Foundation 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.
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
2023 Conferences are June 22nd-24th
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 below!
Details
- June 22nd - June 24th, 2023
- Embassy Suites by Hilton Seattle
- Address
Embassy Suites by Hilton Seattle
Tacoma International Airport
15920 West Valley Highway
Seattle, Washington, USA 98188
Scientific Medical Conference
- Thursday, June 22nd - Friday, June 23rd, 2023
Family Medical Conference
- Friday, June 23rd - Saturday, June 24th, 2023
"Our favorite things about the Foundation are the conferences where we are able to meet other families who share the same struggles.
We appreciate the guest speakers and specialists who can help our children and they give us hope to help advocate for our daughter."
Steps to Register
• Click the desired conference registration button to register for the conference 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 Seattle Tacoma International Airport • follow the directions below.
If you’d like to stay at the Embassy Suites by Hilton Seattle click the button below to reserve a room in the conference block of rooms by May 24th, 2023.
Those needing a special ADA room should call Noelani Corpin directly: +1 (206) 219-2144
Call to Reserve a Room
If you’d like to stay at the Embassy Suites by Hilton Seattle reserve a room in the conference block of rooms by May 24th, 2023.
Call +1-800 Embassy (+1-800-362-2779)
Reference Group Code: 91G
If you need a special ADA room should call Noelani Corpin directly: +1 (206) 219-2144
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.
