Emily was diagnosed with Phelan McDermid Syndrome in October 2022.  Phelan McDermid Syndrome is a rare genetic syndrome with just over 3,000 cases ever documented worldwide.  Emily is nonverbal and has peresevered through many other developmental challenges (fine motor delays, gross motor delays and others).  Everyday tasks like getting dressed are challenging for Emily, but she meets these challenges head on with a smile.  Emily receives regular occupational, speech and physcial therapy which have helped her learn many skills that come naturally to most.  Emily's peristence and determination are inspiring to me and our family and I couldn't be prouder to be Emily's dad!

I am running the 2023 Tobacco Road Half Marathon to help raise awareness and funds for the Phelan McDermid Syndrome Foundation.  The Foundation has been an incredible resource for my wife Jen and I.  Since Phelan McDermid Syndrome is so rare, most doctors have never heard of it.  The Foundation has provided us with information, guidance, and a community of other families who have been touched by Phelan McDermid Syndrome.  It would be much more difficult to navigate Emily's diagnosis without the support of the Foundation.  Perhaps most importantly, the Foundation has given us hope for the future for Emily and others impacted by Phelan McDermid Syndrome.

I am also running this fundraising event at the same time as the Foundation's "Phelan Lucky" campaign.  I will be sporting my Phelan Lucky shirt on race day! 

Thank you for visiting my fundraising page.  Even the smallest of donations is impactful and supports families, programs and research for this rare syndrome.  You may also visit the Phelan McDermid Syndrome Foundation website (www.pmsf.org) for more information about the syndrome, the Phelan Lucky campaign, or to donate.

100% of the donations made through this page go directly to the Phelan McDermid Syndrome Foundation.