For the last ten years, my friends Keegan and Tanya Johnson have been fighting tirelessly to raise funds for and awareness about Prader-Willi Syndrome. Their firstborn son Dante was diagnosed with this rare genetic disorder as a baby. One of the many issues that goes along with this disorder is never-ending hunger. Never-ending.
They were told they would never raise any money for the cause because it wasn’t well-known like cancer. But they didn’t listen. They raised $50,000 at their first One Small Step walk-a-thon, together with their PWS network they have raised more than $5 million, and they were even invited to the White House by Michelle Obama when they won a video contest.
Beyond inspiring. Then recently, some of the geneticists they work with came up with the idea to try and reactivate the maternal genes in people with Prader-Willi Syndrome. This breakthrough could be life-changing. But the researchers needed a million dollars to continue their quest.
At the 10th annual PWS gala last week, hosted for a decade by Michelle and Manny Cordeiro, Keegan shared their story. Right down to the current need for a million dollars.
And guess what happened? An anonymous donor came out of the audience and said he was so impressed with the energy in the room and what the community had accomplished so far, that he would be willing to donate the million dollars needed to keep moving forward.
The specific ask was answered. It took years of hard work and perseverance by many people to arrive at that moment. But the moment would not have happened if the question wasn’t asked.
As Paulo Coelho said, “And, when you want something, all the universe conspires in helping you to achieve it.”
Have you decided what you want and have you said it out loud? Have you committed to taking action? Even if it’s just one small step at a time?
As Lao Tzu said, “The journey of a million miles begins with one step.” It’s time to start walking.
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