Would you consider continuing your support and making an impact for families affected by dup15q?

We want to thank you for your past support of the Miami Believe Walk event. The Believe Walk, organized by myself and Christine Benetiz, not only honored our own children, Devin and Lulu, but several other children affected by dup15q syndrome who live right in our area. Dup15q syndrome is a neurodevelopmental disorder caused by extra genetic material on the 15th chromosome. Symptoms may include motor delays, intellectual disability, autism spectrum disorder (ASD), and epilepsy, including infantile spasms.

It’s been some time since we have got together. While we don’t see another Miami Believe Walk event in the near future because, well... life with busy kids and teenagers! Devin is a typical 17-year-old teenager, moody at times, excited at others, and keeping us on our toes every day! We have started Senior year (Yay, class of 2024, here we come!) and look forward to his progress there - focusing a lot on life skills and self-care.

As we enter the “adulthood” stage, we’re now embarking on uncharted waters again (Guardianship, special needs trusts, adult issues) - and this is where the support from the Dup15q Alliance comes. We’re again relying on family support for older children / young adults, learning how to navigate this new phase in his life. With the connections we’ve made through the Alliance, we have partners by our side.

With the continued research and available resources, we don’t feel alone and know we can conquer this new WORLD for Devin (and us!).

Because of your support of our Miami Believe Walk, research has progressed and the first dup15q syndrome-specific clinical trial has just opened! They have expanded to 18 specialty clinics and just closed their largest conference to-date with over 500 families in attendance.

There is still much work to be done. Many families struggle with the multiple symptoms that come with dup15q, including sleep disturbances, limited communication, GI issues, uncontrolled seizures, feeding difficulties, mobility issues, and others. The Dup15q Alliance is determined to find treatments and make positive changes to the lives of all those affected by dup15q syndrome. The Dup15q Alliance relies on fundraising efforts to continue to expand programs and resources and support research into specific symptoms.

Would you consider continuing your support and making a gift in honor of Devin to the Alliance as they continue to work towards targeted treatments and improving the quality of life for families affected by dup15q syndrome? You can make a gift by sending a check or simply going directly to www.dup15q.org/devin

We love and thank you for your continued support.,