If you haven’t heard of Jacobsen’s Syndrome, I wouldn’t be surprised. To date, there are less than 1,000 diagnosed cases in the world. Our daughter, Catelin, is the only known child with Jacobsen’s Syndrome in Nevada. 

Jacobsen’s Syndrome (JS or 11q-) is a rare genetic disorder that is caused by a partial deletion of the long arm of the 11th chromosome. Children and adults with 11q- can be very high functioning, but are commonly prone to bleeding issues, heart defects, immunodeficiency issues, short stature, eye problems and a myriad of other medical complications, developmental delays and behavioral issues. 

It is extremely overwhelming when your child receives a medical diagnosis, especially with something so rare.  When Catelin was born in 2010, there were not any medical professionals or specialists in our area who have ever treated a child with JS. The only geneticist in the state of Nevada had never seen a case, no therapists had heard of it and no one at early intervention knew what it was. There we were, brand new parents with a million questions and no one to ask. 

Finding the 11q Research & Resource Group and attending our first 11q R & R Group family conference was a lifeline for us. The 11q R & R Group not only connected our family with doctors from all over the world experienced in 11q disorders, but more importantly, with other families who share similar challenges and struggles. Through networking, cooperation with the medical research community, and the sharing of information, we are better able to meet the challenges brought to us as parents, families and friends of 11q children. 

Given the rarity of chromosomal disorders, particularly JS, much remains unknown and funding for research is very difficult to obtain. Despite inadequate financial resources, research has come a long way in just the last few years and very much to the credit of the 11q R&R Group’s Chief Medical Advisor, Dr. Paul Grossfeld of UCSD. His work with the scientific research community to identify the causes, treatments and the prevention of congenital heart defects, neurocognitive and behavioral problems, and the life-threatening bleeding issues that not only affect children with 11q-, but millions all over the world.

These endeavors are only made possible by the grassroots efforts of families like ours and the generous support of friends like you!

After two years of virtual events, we are thrilled to host our 10th Annual Create Art with a Heart event benefiting the 11q Research and Resource Group LIVE at Shakespeare’s Pub and Grill in Henderson, NV on October 1, 2022. Since 2012, this event has raised over $100,000 for our cause. 

We wish for you to join us in our efforts to improve the social and physical well-being of all children living with chromosomal disorders by making a simple donation. We are arranging a multitude of gift baskets to be raffled off that evening. Any size donation is much appreciated as we are combining items into several theme baskets. All contributions will be promoted across our social media and announced at the event. 100% of the revenue raised from our raffle goes directly to the 11q Research and Resource Group and all donations are tax deductible.

100% of the revenue raised from our raffle goes directly to the 11q Research and Resource Group (EIN: 04-3840156) and all donations are tax deductible.The 11q Research and Resource Group has no paid employees and all of the board members are volunteers, so every dollar donated will be allocated toward supporting research and funding of conferences that provide families of affected children with the ability to learn more about their syndrome from doctors and professionals from around the world.

Please let me know if you are willing to contribute in any way and how we can coordinate your gift. 

If you have any questions about our cause, please do not hesitate to reach out to me. Thank you for your consideration!