Please tell us about your family:

Philip and Emily Robertson are the parents of Eden, 9 years old and Jude, 3 years old, and live in Arkansas. Eden is diagnosed with Phelan-McDermid syndrome.

Eden was diagnosed in early 2019 just before her 4th birthday and since then, we have diligently worked to get her the resources needed to grow, learn, and develop to her fullest potential. Eden and Jude love to sing back and forth together, play at the park, go on walks, crash on crash-pads together, and more! Eden loves reading books, watching Disney movies, dressing up like Disney princesses, going on walks, places that have bounce houses or trampolines, and anything to do with water. Her favorite place in the world is Great Wolf Lodge and their waterpark!

Please tell us about your event:

My fundraiser is called Endure4Eden, and it is an endurance-based golf challenge. I completed a similar one in 2021 that raised ~$12,000 for the foundation and a local therapy center, but this one will hopefully be bigger!

This year’s event will take place on April 12, 2024, at Eagle Crest Golf Course in Alma, AR. There will be five individuals participating: myself and Zach Brunet, who have family ties specific to PMSF. Eden and Zach’s sister, Ashlyn, are both diagnosed with Phelan-McDermid syndrome. I feel blessed to have another individual participating with me who has ties to Phelan-McDermid syndrome!

The challenge will be a 24-hour straight, walking-only (no cart allowed) golf challenge, where the five of us will attempt to set a new Guinness World Record for “Most Holes of Golf Played by a Team in 24 Hours (Walking)”. This will include using glow-in-the-dark golf balls overnight, as well as headlamps so we can see.

Endure4Eden will start at 8:00 AM on Friday, April 12, and go through 8:00 AM on Saturday, April 13. We would love for anyone and everyone who can be out there to join us in support of the foundation and the families with loved ones affected by Phelan-McDermid syndrome! Anyone who would like to volunteer to help out with the event is also welcome! We would love for as many people to show up as possible, as we expect media outlets to cover the event, which will help raise awareness!

Any questions or other comments you would like to share?

I will be doing a combo of donations and raffles for the fundraiser. If anyone is interested in donating an item(s) for the raffle, please let me know!

Please tell us why you fundraise for PMSF:

I fundraise for the Phelan-McDermid Syndrome Foundation because it’s one of the ways I, personally, can make a difference. I’m not that knowledgeable about genetic disorders, clinical trials, research, and therapies, so I’m not able to help my daughter as much as I would like in those areas. My wife is brilliant in those fields and is Eden’s biggest and best advocate, ensuring Eden can access all available resources and working closely with Eden’s team of therapists and teachers to promote her growth and development as much as possible! However, organizing events like this to raise awareness and funds for causes close to my heart is one way I hope to contribute to positive outcomes in the future, particularly related to finding a cure for Phelan-McDermid syndrome!

How do I help or get involved?

You can contact Philip Robertson at endure4eden@gmail.com.

Read more about the event in this article from Do South Magazine.