A good friend of mine from California, Roy Zeighami, contacted me last year about his son, Reed. Reed was diagnosed with MPS – Sanfilippo Disease. It’s a rare genetic disorder that causes neurological issues leading to dementia and, ultimately, death. Roy’s story and passion to improve the lives of all children – not just his son’s life – suffering from rare diseases has inspired me to help grow awareness.
So I’m enlisting the help of my friends to promote my fundraising on charitybets.com. Charitybets.com was started by some former track athletes who thought it might be interesting to combine sports betting and charitable fundraising. It’s a neat concept that allows the user to donate a minimum amount of money and wager a larger amount on a specific outcome from a sporting event. For example: you might donate $25 as a minimum, but are willing to donate $100 in the event I make the team. So you are betting $75 on whether or not I’ll make the team and whether or not you’ll donate more money to Global Genes Project.
The concept allows for a unique media angle if the difference between the minimum donations and maximum donations is great. For example: 1000 people agree to donate $25 minimum. If I make the Olympic Team, they will donate an average of $75 more. Meaning Global Genes receives $25,000 regardless of how I finish, but receives $100,000 if I make the team. The larger the difference, the more sensational the story line. That’s a scenario that PR people and reporters love to write about. And while the money is important to fund research, greater awareness often allows for better future fundraising.
I’m asking my friends to forward this email on to your friends and family to start the process. Rare diseases really aren’t so rare. There are over 7000 diseases within the rare category affecting 350 million (mostly children) worldwide. Let’s make a wager that will help fight rare diseases.
Here’s the link: https://charitybets.com/users/133-adam-nelson
P.S. Rare diseases are represented by the Blue Denim Genes Ribbon, so you will see me competing in a uniform this year that has the ribbon on it. Thank you to Saucony for letting this happen.