September Under the Stars – Hosted by Cure Rare Disease

2023 marks our 5th year fundraising and hosting Cure Rare Disease at Pine Orchard Yacht & Country Club.

When I think back on where we started and how far we’ve come, it’s really remarkable what we’ve accomplished as a grassroots organization and as a community. It’s overwhelming, actually.

This year has been marked by achieving our very first goal of dosing patient, Terry Horgan, in October of 2022. We were elated at the thought of stopping the progression of this disease and potentially regressing its effects for him. It would prove success and we could then confidently dose our next patient. Tragically, Terry passed during his trial. The devastation we felt as a family and the CRD team, was beyond words. After some time and still trying to figure it all out, we are ready to continue this fight for Max and all of the other boys.

For those who do not know, our son, Max Herzog was diagnosed at 6 months old with Duchenne muscular dystrophy which is a rare, fatal, genetic disease. When he was diagnosed we had no hope for treatment (let alone a potential cure), so we kept this horrible news to ourselves until 2019 when we met Rich Horgan and his mission aptly named “Cure Rare Disease”. It wasn’t until then that we were able to talk about Max’s diagnosis without breaking down in conversation. I know the only reason was that we finally had hope that this diagnosis would not be Max’s story. So for the last 5 years we have moved mountains, with the unrivaled work of CRD and the support of this beautiful community, to cure our son and every boy facing the same diagnosis.

Max’s treatment, his very own “clinical trial”, has been intentionally stalled following Terry’s passing to ensure the utmost safety, but also new AAV options are being developed that could prove to be safer and even more effective in transporting his personalized therapeutic. We have one opportunity to get this right so our team has assured me we will not stop until we’ve exhausted every possible option for success. As his mom, I want him dosed YESTERDAY but, of course, we know now more than ever, the younger the boys are, the safer it is to dose them! Besides this, it is a slow torture to watch this disease take from him daily.

So here we are again…year 5 and working harder than ever to conquer this disease with a successful treatment and a whole lotta love!!!! Jesse and I invite you to join us for an evening in “September Under the Stars” full of inspiration, love and a celebration of all that is good in this world; friends, family and hope!!!

With love and endless gratitude,

Jesse & Stephanie Herzog

Agenda:

5:30pm-7:00pm: Cocktail Hour

7:00pm-8:30m: Dinner, Program & Live Auction

8:30pm-10:30pm: Live Music & Celebration

Dress code: Resort Casual (no jeans)

Ladies, keep in mind you will be walking on grass!