In addition to informal networking, family mentorship, and social media interfaces such as Facebook, the SLO Foundation sponsors a national scientific and family medical conference every other year to support families affected by SLOS.
After families receive a diagnosis of Smith-Lemli-Opitz syndrome, they are often challenged in finding credible information and support. Parents’ time and energy can be consumed by caring for their child who is living the real-time challenges of SLOS, leaving little left to seek, explore, and advocate for themselves.
As an advocate for families, Smith-Lemli-Opitz Foundation shoulders the efforts in networking and in gathering information from those living and working with SLO. The Foundation fosters relationships and disseminates useful information to help relieve some of the stresses involved in living with the syndrome.
Smith-Lemli-Opitz syndrome is a lifelong disorder with no cure and limited treatment options. It is often misunderstood.
Many individuals who have the syndrome remain undiagnosed for long periods of time or indefinitely.
It is the goal of the Smith-Lemli-Opitz Foundation to fund research that fosters an understanding of SLOS for a proper and clear diagnosis, effective treatments, and ultimately a cure.
Celebrating Cliona’s birth inspired her family to establish an endowed fund to provide support for SLOS families through the Foundation.
A 2025 endowment fundraiser to provide an eventual annual source of support for the Foundation to help SLOS families.
The book “I Want to Survive” tells the journey of a family as they raise a child with a rare genetic disorder called Smith-Lemli-Opitz.
With deep sadness, the Smith-Lemli-Opitz Foundation announces the passing of Dr. John Marius Opitz, who co-discovered SLOS.
Happy Rare Disease Day! The Beyond the Diagnosis exhibit at the EVERSANA National Meeting featured one of our own.
New Milestones Reached in Fundraising
during Giving Hearts Day 2024
Thanks to you!
You cannot hope to build a better world
without improving the individuals.
To that end, each of us
must work for his own improvement,
and at the same time,
share a general responsibility for all humanity,
our particular duty being to aid those
to whom we think we can be most useful.”
You don’t have to go through life with Smith-Lemli-Optiz syndrome alone. Be in this together with us.
We work worldwide to improve the quality of life for people with Smith-Lemli-Opitz syndrome through educating and supporting families, spreading SLOS awareness, and funding research into the disorder.
The Smith-Lemli-Opitz Foundation is a registered charitable organization. Donations are tax-exempt under IRS 501(c)(3), ID #23-2635206.