Builders For Good - A Clay Shooting Fundraiser benefitting Dup15q Alliance

Meet Hattie

Hattie's journey began with an uneventful pregnancy, leading to her healthy birth in April 2013. At 8 lbs. 14 oz., she was an easygoing and happy baby, though not meeting typical milestones. Early intervention started at 10 months but showed limited progress. At 18 months, genetic testing revealed isodicentric Dup15q Syndrome, upending their world. Just before her third birthday, seizures emerged, escalating to over 100 daily at their worst. Daily battles ensued to manage them, resulting in numerous injuries. Despite trying various medications, relief was elusive. Ultimately, a corpus callosotomy in the summer of 2023 was performed, reducing the quantity of seizures, yet they persist daily, with the fear of SUDEP ever present.

Dup15q Syndrome also brought an autism diagnosis, developmental delays, behavioral issues, ADHD, and sleep disruptions. Hattie manages these with multiple daily medications. She attends a public school program for children with disabilities, receiving various therapies and support for her daily activities, with a need for lifelong assistance. Despite being nonverbal, Hattie is expressive and loves cuddles, books, Taylor Swift, music videos, swimming, and dogs. Resilient and cherished by many, she enjoys immense love and support from friends and family.

Joining the Dup15q Alliance has provided invaluable resources and support, yet more research is needed for this relatively unknown disorder. Today, at ten years old, Hattie is vibrant, loving music, books, swimming, and family. Her smile lights up the room, and her cuddles warm hearts. Despite her challenges, she remains resilient, embodying the hope for targeted treatments and a brighter future for those with dup15q syndrome. Supporting research into this rare disorder is vital for Hattie and others like her, to potentially lead lives with fewer complications, flourishing as their happiest selves.

Dup15q Alliance

We are parents, grandparents, professionals, and advocates providing support for patients, families, and caregivers. We are passionate about personal connections, family support, community awareness, and scientific research.

Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.

As part of our mission, Dup15q Alliance seeks to unite families, researchers, and professionals and promote research, awareness, and understanding of chromosome 15q11.2-13.1 duplication syndrome and related disorders. Dup15q Alliance formally endorses and funds research and collaborates with researchers interested in research on chromosome 15q duplications by disseminating research information and promoting opportunities for Dup15q Alliance families to participate in research studies.

The Dup15q Alliance is determined to find treatments and make positive changes to the lives of all those affected by dup15q syndrome. We NEED to find better treatments for all of the symptoms of dup15q syndrome. We NEED to know how those with dup15q syndrome develop over time. We NEED to know why some children affected by dup15q syndrome have seizures and some don’t. We NEED to emphasize the importance of research. We may be rare but we are not small.

To learn more, visit www.dup15q.org

Donations can also be made by check or money order. Make check payable to “Dup15q Alliance” and send to:

Dup15q Alliance
250 N Trade St, Ste 205 PMB 155
Matthews, NC 28105
USA