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Our nonprofit is dedicated to supporting families affected by deletion syndromes through education, advocacy, and community resources. We strive to raise awareness, promote research, and improve access to care for all individuals impacted by these rare genetic disorders. There is no cure for deletion syndromes; treatment focuses on managing symptoms and improving quality of life through a multidisciplinary approach. These are crucial:

     • Therapies: Early intervention with physical, occupational, and speech therapy is crucial. Intensives often can assist someone with a deletion syndrome to get to a higher stage of development, increasing mobility and independence. These are not typically covered by insurance.
     • Medical Intervention: Treatment for seizures (anti-epileptic drugs), and management of cardiac, vision, or hearing issues by specialists. Swallow studies, feeding clinics, and equipment may also be vital.
     • Support: Sign language or communication devices can assist with communication limitations. Finding other individuals or families who are managing a deletion syndrome can be a great source of comfort, education, and joy. Financial support can make a huge difference for families to be able to get to National Conferences and to pay for out-of-pocket expenses that impact quality of life.

Whether you are a parent seeking guidance, a healthcare provider looking for resources, or an advocate wanting to make a difference, we are here to help. When people first learn about deletion syndromes, they often learn about many challenges that come with these genetic differences, but those differences do not tell the whole story. Every individual with a deletion syndrome has their own pace and personality, but there are so many beautiful and positive things that they bring to the world. Each person’s, or family’s, experience tells a story of hope, resilience, and determination. These stories are reminders that with the right support, individuals with rare genetic differences have a positive impact and will surprise, inspire, and achieve, if only in their own special way.

This non-profit will provide education to NICUs, Children’s Hospitals, hospital case managers and social workers, pediatricians, specialists, families, and the general public. This non-profit will fundraise and provide financial support to families for things like equipment and intensives that are not covered by insurance and for the costs of attending the 1p36 Deletion Syndrome Support and Awareness National Conference (or other deletion syndrome conferences) where families can come together in love, support, and even grief, as there are children and families who do not return each year because of this genetic difference. This non-profit will advocate on the local, state, and federal level for expanded benefits and services for our family members and friends who have a deletion syndrome, a genetic difference that makes life harder and also more sacred, so that their quality of life is raised. Lastly, we exist to add some fun and levity into our own lives and into the lives of others. Our beloved Makai has changed the world already. He is truly a wonder and a huge source of joy for all who meet him. We want deletion syndromes to be as well-known as other genetic differences, like Down Syndrome, and for our realities to be acknowledged, supported, and even celebrated. People with deletion syndromes are not a monolith and deserve to be seen as individuals. They want a life like yours and to be accepted as is. Love doesn’t measure chromosomes.