The Deleon's journey living with a UCD has been a struggle. In the beginning, thirty years ago, they were lost, alone and afraid. There was no one to talk to; they only had each other.

Thanks to social media, they happened to stumble across another family living with a UCD and from that a UCD GROUP was created, which now has over 700 members. Robyn and her husband sensed a need in the UCD community that wasn’t being met and together they created Connecting Families UCD Foundation.

Connecting Families UCD Foundation, holds annual educational meetings and Family Camps. Family Camps are a big hit as it’s a place where UCD families come together for a weekend of family fun. This camp is offered to all ages, infants and Grandparents are welcomed! Connecting Families UCD always has a specialist on site during meetings and camps. Additionally, a Life Enrichment Program offers scholarships to families who may want to go back to school or take a class of some sort.

Connecting Families UCD Foundation offers all sorts of resources for families and directs them to the areas in which families may need help, such as school issues, dietary needs, finding a physician, programs to help them with costs of supplemental medication. They also have educational podcasts and do hometown visits to families.

For almost two decades there were only doctors to speak with. When Robyn finally did find some of those affected, simply speaking to these few became an important healing process that ran both ways. This is something that Connecting Families UCD Foundation wishes to pass on to all with UCDs because they understand exactly how alone this can make families feel.

In Robyn’s words, “You are not alone! We are not trying to convey that we know it all. We are aware that all cases are different, but having said that, we understand the devastation caused by this horrible disease.”

Through Connecting Families UCD Foundation, the Deleon’s wish to give others what was missing for them—someone who understands and can reach out with support.

“It is only through our faith and through advances made by spreading awareness that we were able to get this far. We have learned so much and continue to learn to this day.” says Robyn.

This journey will continue until there is a cure, and hope is only made complete in others seeing what is done for us all. The Deleon’s want to share this hope with the entire world of UCD patients and believe no one should be overlooked.

In starting this foundation, they are dedicating themselves to bringing much needed support to the UCD community. They will strive towards awareness, (medical and personal), education, and bringing hope to UCD friends and families. The Deleon’s desire is to bring all families together, no matter where they are, and with your support, they can continue Connecting Families all over the world.

For more information, please visit: https://ucdfamily.org