2024 1p36DS Conference-Colorado

As so many of you know, Zola was diagnosed with 1p36 Deletion Syndrome 8 years ago. Ever since her diagnosis, our world continues to grow in a very special way. We hit more trials and tribulations, go through different surgical procedures and diagnosis’s. Constantly advocating and supporting her in every aspect of life. We are her voice, her advocate and her biggest fans. We learn different ways to love and cherish all her milestones and progress. How to open our eyes to the BIGGER picture. Through ALL the rocky roads we’ve endeavored each year, one special occasion seems to help reset and clarify our minds; our enamored 1p36 Conference-where our love grows more and more with all our 1p families coming together.
WHAT IS 1p36DS?

1p36DS is a rare genetic condition that typically cause severe intellectual disability. Most have structural abnormalities of the brain, and seizures occur in more than half of individuals with this disorder. Affected individuals usually have weak muscle tone (hypotonia) and swallowing difficulties (dysphagia). Other features include a small head that is unusually short and wide; vision and hearing problems; abnormalities of the skeleton, heart, gastrointestinal system, kidneys, or genitalia; and distinctive facial features.