The purpose of the Jukie Jones Duren Endowment is to provide ongoing unrestricted funding for the Smith-Lemli-Opitz Foundation.
Established by Dr. Andy Jones and Kate Duren on January 5th, 2025
2025 Fundraiser
January 5th, 2025
Dear Friends,
This week we celebrate our son Jukie’s 24th birthday!
We’re celebrating in San Francisco, hiking one of his favorite trails (Land’s End) and visiting our family’s favorite spots in the City.
Given the challenges Jukie faces, we take every opportunity to spoil him with love and attention. Nothing makes us happier than to see his face light up and hear his infectious laughter.
Most of you know that Jukie was born with the rare genetic syndrome called Smith-Lemli-Opitz syndrome. Two years ago, we started the Jukie Jones Duren endowment to benefit the Smith-Lemli-Opitz Foundation, a small but mighty organization which provides support for SLO families all over the world.
Because of donations to the Foundation from friends such as yourself, the (mostly volunteer) Foundation board and staff have been busy with the following activities:
- Funding SLO research “seed” grants,
- Raising awareness of SLO to increase the rate of diagnosis,
- Welcoming new parents with an online parent support group and family mentor program,
- Supporting grieving parents with a parent loss support group,
- Distributing welcome packets for newly-diagnosed families,
- Subsidizing the biennial SLO family medical and scientific conferences,
- Connecting families to researchers and SLO specialists.
Such gifts have also helped to fund the creation of the SLO Foundation website, which we invite you to check out.
With your help, we have made significant progress in reaching our $50,000 goal for this endowment. This goal inspires us because this endowment will support families affected by Smith-Lemli-Opitz syndrome. As the first contact for parents of newly diagnosed children (often newborns in the NICU), Kate knows just how overwhelmed affected families typically feel by the diagnosis and daunted by the challenges of facing a devastating syndrome with a high mortality rate.
All donations are tax-deductible (Fed ID# 23-2635206) and will bring us closer to our $50,000 goal. Please mention the Jukie endowment when you give.
If Jukie cared about recognition, he would love that this endowment bears his name. I think he would mostly care that so many other affected children and their families will benefit from your donation and the amazing work of this non-profit organization.
One can donate via the Smith-Lemli-Opitz Foundation website giving page. If you use the website giving page, please include Jukie’s name on the donation form or interface. The Foundation leadership knows just who he is – you can find pictures of Jukie a few times on the Foundation website – and they will know just how to direct the funds. Thank you!
We hope in 2025 to raise $5,000 for the Foundation. For all the families that need our support, I hope you can help us reach our goal.
With love and appreciation,
Andy Jones and Kate Duren
The parents of Jukie!
