We'd love to have you for food, fun and games!
My name is Will Florence and I am a Senior at Parish Episcopal School in Dallas, Texas. My best friend is my 15-year-old brother, Sam, who has Congenital Myotonic Dystrophy. Sam is a fun-loving teenager who makes the best of any situation, and brings light to everyone he encounters. Having Myotonic Dystrophy has not inhibited Sam's passion for life nor his ability to be a kid. Some of Sam's favorite things to do include playing with his dog, Harry, playing video games, and shooting hoops in his backyard.
For a multi-year project at school, I was challenged to make a difference in my community while demonstrating leadership. I was unsure of which direction I wanted to take my project, so I turned to the things I am passionate about. I have been running track and cross-country at my school for several years, and I have fallen in love with running. As I thought about how I could channel my love for running constructively, I came up with a plan to facilitate my own 5K race. Once I opted to create a race, deciding to give back to the Myotonic Dystrophy Foundation (MDF) was a natural choice. I would do anything for my brother Sam and I am thrilled to be able to contribute to a foundation that has done so much for him and thousands of others like him.
In 2011 and 2013, my mom was inspired to raise money for MDF, so we gathered all our friends and formed a team in the Dallas Marathon. Hundreds of members of our community rallied by my mom's side and joined the "squad" by running in the marathon, or by volunteering to work at our Sam's Squad water station along the route. Seeing my mom step up and raise over $170,000 was truly inspiring. I hope to achieve the same kind of profound impact.
This year's 2017 Sam's Squad 5k Run and 1K Walk takes place on October 21, 2017, and will begin and end on the Parish track. The course will loop around the school's campus, and all 5K runner's times will be accounted for through a chip timing system. The Sam's Squad 5K Run and 1K Walk is welcome to runners, joggers, and walkers of all ages.
Can't make it? You can support us by making a donation! However, if you cannot participate in the race there are still plenty of other ways to get involved. You can sign up to volunteer during the race or join the "squad" through direct donations.
We're looking forward to seeing you on October 21, 2017, at Sam's Squad 5K Run and 1K Walk!
Read More About the Florence Family
The Florence family lives in Dallas, Texas, and consists of Sam (15), Will (18), and their parents Kirk and Liz. Sam was born with Congenital Myotonic Dystrophy. Will was not.
Myotonic Dystrophy (DM) affects everyone differently, and it impacts every system in the body. For Sam, Myotonic Dystrophy makes every muscle in his body weaker than a normally developing child; he also has cognitive disabilities and was born with clubfeet.
The Florence Family was desperate to understand more about DM and how it might take shape for Sam. Shortly after he was born, a doctor advised them not to use the internet to learn about DM, as many sites focused on the most dire situations and contained misinformation; notably, the Myotonic Dystrophy Foundation (MDF) website (www.myotonic.org) didn't exist at the time. Today, the MDF website contains a wealth of helpful, factual information to help families understand and cope with DM.
MDF has been a huge blessing for the Florence family and many others like them. MDF organized and formed a community of families affected by DM. Through the Foundation's mission for a Care and a Cure, MDF delivers comprehensive support resources, and drives research to accelerate the discovery of DM therapies.
Sam has blossomed into a delightful and charming teenager who brings joy to everyone he comes in contact with. He and Will are very close and have a wonderful, supportive relationship. They truly adore each other, and for that, we feel lucky. Sam also benefits from having empathetic friends, and an extremely caring extended family with grandparents, aunts, uncles, and cousins who love him infinitely.
The Florences believe that life is more than simply what's handed to you; rather it is what you make of it, and this idea propelled them to organize the first Sam's Squad Run in 2011. The race was a fundraiser that utilized the annual Dallas White Rock Marathon as a springboard for their own efforts to raise money. That year they raised enough money to fund a fellow at a research hospital who devoted two years to researching myotonic dystrophy.
We thank you wholeheartedly for supporting Sam's Squad.
-The Florence Family
Email Will Florence, organizer of Sam's Squad 5K Run and 1K Walk, at firstname.lastname@example.org.
About the Myotonic Dystrophy Foundation
The Myotonic Dystrophy Foundation is the world's largest myotonic dystrophy (DM) patient organization. Its mission is Care and a Cure: to enhance the lives of people living with myotonic dystrophy, and advance research efforts focused on finding treatment and a cure for this disorder through education, advocacy and outreach.