Smith-Lemli-Opitz Foundation

Meet our son, Jukie.

His infectious smile lights up every room, and his curiosity and sweetness touch everyone who knows him. When he was born 25 years ago, we had never heard of Smith-Lemli-Opitz syndrome. We quickly learned that we were both carriers of the gene mutation that causes SLO — but we had no idea what that would mean for our boy.

Our genetic counselor advised us not to research SLO, so we felt lost and isolated. What we did know was that we needed to connect with other parents who truly understood. That’s how we discovered the Smith-Lemli-Opitz Foundation — a tiny nonprofit at the time — and it became our lifeline.

The SLO Foundation now supports a global community, offering resources, support, and hope to families around the world. Nearly everything we’ve learned about SLO has come through the Foundation and the incredible parents we’ve met along the way.

Today, the SLO Foundation is participating in Giving Hearts Day — our biggest fundraiser of the year — and your support truly means the world to families like ours. Donations can be made in honor of our son, Jukie, through the Jukie Jones Duren Endowment for the SLO Foundation, or in honor or memory of someone you love who has Smith-Lemli-Opitz syndrome.

Every gift, no matter the size, helps ensure that when a family hears the words “your child has Smith-Lemli-Opitz syndrome,” they are not alone. Your generosity provides immediate access to trusted resources and connects families with a community that understands the road ahead, including:

❤️ Hosting family and scientific conferences
🩷 Programs for newly diagnosed families
❤️ Family and medical networking
🩷 Research funding and specialist referrals
❤️ Family mentorship programs
🩷 Parent and family support groups
❤️ SLO parent loss group
🩷 Educational webinars, video library, and website resources

Every gift provides support, connection, and hope to families when they need it most. Please consider giving today and stand with SLO families around the world. 🩷❤️🩷

https://app.givingheartsday.org/ #/charity/1628

With gratitude,
Kate Duren
Jukie’s mom & President, SLO Foundation

Dr. Andy Jones
Jukie’s dad

“Keagan is a silly, fun-loving 11 year old boy who enjoys video games and playing outside with siblings. He got his diagnosis fairly recently, and most of his doctors have never even heard of SLOS.

The Smith-Lemli-Opitz Foundation has given us so much information and put us in contact with local families of children with SLOS, as well as information about resources and specialists who are knowledgeable of this syndrome. The network of people and resources has been unimaginably valuable to us.”

Katy (Keagan’s mom)

If you would like to support the Smith-Lemli-Opitz Foundation for Giving Hearts Day, our biggest fundraiser of the year, visit:

https://app.givingheartsday.org/ #/charity/1628

🩷❤️🩷

“Josh is now 16 years old. I did not give birth to Josh, as I foster him here in the UK. He has lived with me and my husband since he was 5 years old. We have no contact with his birth family.

Josh is disabled, deaf, and nonverbal. He needs 24/7 round the clock care. Josh started on a trial, taking cholesterol, around the age of 6 years old. It will never reverse the syndrome, however, it will give him the whole of wellbeing, which we find it does, given he has had less infections since he started the trial. Now that Josh is 16, we have asked the question: should we stop the trial of him taking cholesterol daily? The answer from the consultant is no, due to the fact there are not enough children that have SLOS to measure against the outcome.

As it’s such a rare condition, the funding is not available. I would love if anyone could make a donation to the Smith-Lemli-Opitz Foundation, as the information we have from them, and from other parents around the world 🌎 is invaluable. But we certainly need more research in the condition our beautiful boy has.”

Bronwen (Josh’s foster mother) 🇬🇧

If you would like to support the Smith-Lemli-Opitz Foundation for Giving Hearts Day, our biggest fundraiser of the year, visit:

https://app.givingheartsday.org/ #/charity/1628

🩷❤️🩷