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 3th, 2024
2024 Fundraiser
January 3th, 2024
Dear Friends,
This week, we celebrate my son Jukie’s 23rd birthday!
Jukie turns 23 on January 4th! He has graduated from school, and thus we get to spend so much more time with him than we did when the school bus visited our home twice every weekday. Although he misses the rides, the time with his peers, and the adventures with his teachers, we have more time for long walks on the greenbelts of Davis, as well as leisurely meals at Dos Coyotes, Sudwerk, and his other favorite restaurants.
On this celebratory occasion, we are hereby announcing our annual fundraiser and our goal one day to fully fund The Jukie Jones Duren Endowment for the Smith-Lemli-Opitz Foundation. Like many people with Smith-Lemli-Opitz syndrome, Jukie has limited communication skills, intellectual disability, and profound autism. Also like those young people, Jukie communicates his needs and his affection in ways that his family and caregivers have learned to interpret well.
Most families affected by Smith-Lemli-Opitz syndrome don’t have the support system that we have, for his mom Kate has a background in social work and worked with kids and adults with disabilities before she and Andy met more than 35 years ago. Jukie’s sister, Geneva, is now working as a paraeducator at Patwin Elementary, and she brings that expertise back home when she does respite work with Jukie. And Jukie’s younger brother Truman, who towers over him by about six inches, has often interrupted work on his writing projects to make Jukie a meal or start up a Pixar film for him.
Kate’s work supporting parents worldwide who have just discovered their child has this rare syndrome has driven home how much the help provided by Smith-Lemli-Opitz Foundation is sorely needed. These Foundation activities include funding SLO research “seed” grants, raising awareness of SLO to increase the rate of diagnosis, welcoming new parents with an online parent support group, supporting grieving parents with a parent loss support group, providing an equipment exchange program, distributing welcome packets for newly-diagnosed families, subsidizing the biennial SLO family medical and scientific conferences, connecting families to researchers and SLO specialists, and growing the research programs, such as an NIH natural history study that we and Jukie participate in.
We also think of all the affected families, like ours, that would benefit from additional treatments of this devastating syndrome, one with a high mortality rate. With that in mind, I hope you will help us raise money for The Jukie Jones Duren Endowment for the Smith-Lemli-Opitz Foundation. We hope that with your help, in the coming years we will make progress towards funding the five-year goal of funding an endowment of $50,000 that will provide a steady and everlasting yearly source of support for the Foundation that helps families affected by Smith-Lemli-Opitz syndrome. Through my own volunteer work, I’ve come to appreciate how this small nonprofit organization makes a huge impact.
All donations are tax-deductible (Fed ID# 23-2635206), and all donations that mention the Jukie Endowment will help us take another step towards reaching that goal of $50,000. Amazingly, we have already raised $24,653.78. Because of you, after one year we are almost half-way to our five-year goal. We have four more years to raise the rest!
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.
Please donate via Facebook or via the website giving page using the buttons below. 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 2024 to raise $10,000 for the Foundation. We are grateful to a friend of Jukie’s, Gena Harper, who has already donated $2000 to give us a big boost towards our goal. For all the families that need our support, I hope you can help us the rest of the way.
With love and appreciation,
Andy and Kate
The Smith-Lemli-Opitz Foundation works worldwide to improve the quality of life for people with Smith-Lemli-Opitz syndrome through educating and supporting families, spreading SLO awareness, and funding research into the disorder.
