Team Greyson is walking to raise awareness and funds for Dup15q

Click Here To Register for the 2018 Denver Believe Walk

Belmar Park - Denver, CO. September 16th 8:30 - 12:00.

Family and Friends,

We, along with other Dup15q families, are launching a Believe Walk in Denver on September 16^th to raise awareness and funds for Dup15q Syndrome, a rare chromosome duplication syndrome that causes developmental disabilities, autism, seizure disorders, and numerous other challenges.

Dup15q has impacted our lives significantly. Greyson began having seizures at 6 months old, which initiated a significant series of medical tests and procedures. A genetic panel test identified Dup15q Syndrome, formally known as Chromosome 15q11.2-13.1 duplication syndrome. This syndrome has caused Greyson's current diagnoses of epilepsy, hypotonia, global developmental delay, and autism.

Around the same time as the onset of seizures, we began noticing Greyson wasn't meeting her developmental milestones and initiated early intervention therapy. She began with physical therapy to support her gross motor delays and we have since integrated occupational and speech language therapy. The therapists come to our home 2-3 times a week to work with her and teach us strategies to progress her development through care routines and play.

Greyson has had 8 EEGs (including some 24 hour overnight studies) and has seen numerous specialists in Neurology, Neurodevelopmental Disabilities Pediatrics, Otolaryngology (ENT), and Audiology over the last two years. We are grateful that Greyson has not had any observed seizures and has been off anti-seizure medication since June 2017. Our current focus are interventions related to her autism and developmental delays.

Dup15q is exceptionally rare with only approximately 1,600 known patients in the world. The Dup15q Alliance provides family support and promotes awareness, research, and targeted treatments for Dup15q Syndrome. They have established eight specialty clinics throughout the country where families can meet with doctors specialized in this rare syndrome. We had an invaluable visit at the Geisinger clinic in Pennsylvania shortly after Greyson's diagnosis. Their remarkable team spent an entire day with us evaluating Greyson and educating us about this syndrome. The Dup15q Alliance is a small organization and donations of any size help empower them to continue their mission of assisting families and children to reach their maximal potential.

I know we, like so many other families, will continue to rely on the resources the Dup15q Alliance provides as we continue this journey throughout Greyson's life. Every donation will make an impact and I hope you will consider supporting this organization.

Will you BELIEVE with us? Here's how:

• Click the Donate button on this page to contribute to the mission of the Dup15q Alliance
• Walk with us! Together, we will walk on September 16^th at Belmar Park in Denver. Click the "Register to Walk" link to sign up!

My DUPER IS SUPER!

Love, Lauren, Chad, and Greyson Polak