1. Synchronicity. The rare combination of numbers (if you write the date with the month, day then year) will be 31415 — the first five digits of Pi. What’s more, 9:26:53 a.m. and p.m. will also follow the sequence of Pi and if you think about it (in quintillionths of one second or whatever you can imagine), for those two instants, Pi expresses itself — through the construct of time — fully in its infinity. Pi Day has been celebrated by mathematicians for years, and some of their celebrations have involved pies. So it seems like a natural fit that a rare combination of people, the HD community, should use this celebration to express ourselves fully on this day.
2. We are beautiful people. We just happen to have an unfortunate genetic flaw. The word “horrible” has become commonly linked with Huntington’s Disease. Herein lies the problem. The world hears that HD is “horrible” and since we have it, the world thinks that we must consider ourselves “horrible people.” And who wants to pay attention to a bunch of horrible people? It would be like going to an Ogre Convention. In our community, people faced with HD actually appreciate each other’s generosity, strength, love and determination. That is who we really are, and Pi Day will be a chance to communicate that reality and correct the public’s perception to reflect that we are families worth saving.
3. Sharing infinitely different experiences. Pi goes on without any repeating sequences, unlike our CAG. But the symptoms that HD produces express themselves at different times and in different ways in each of us. Caregivers also have different experiences depending on the way HD expresses itself through the body of their beautiful person. It is not a cookie cutter disease and the public can’t know the full story without hearing from everyone.
4. HD goes on and on like Pi. Unfortunately there has yet to be an end to HD’s path through history and through generations of beautiful people. Raising awareness on March 14 can help make HD finite.
5. It appeals to our competitive nature. According to Wikipedia, 39 digits of Pi are sufficient to accurately calculate the volume of the known universe with a precision of one atom. But the article also notes that people, compelled to break records, are constantly memorizing more and more digits of Pi. Beautiful people with HD are just as competitive; we have even been suspected of trying to (good naturedly) out-do one another in the mission of HD advocacy. Here’s our chance to compete as a group to upload an outrageously high number of HD “slice of life” videos on Pi Day. And with record breaking numbers, we all win on Pi Day. But we all have to do it to win.
6. Pi Day brings us together. Beautiful people with HD and the people who love them. Caregivers and the people and organizations that support them. National organizations like HDSA and international organizations like HDYO. The neurology staff, the psychiatrists, the social workers and the genetic counselors. Filmmakers like James Valvano and radio hosts like Melissa Biliardi. Bloggers like Gene Veritas and Matt Ward in HD. Researchers like Jan Nolta, who work tirelessly to find a cure. Heads of pharmaceutical companies like John P. Schmid and his colleagues at Auspex Pharmaceuticals, Inc. Here’s a great opportunity for an expression of unity. Imagine all the different perspectives we can show the world!
7. Pi Day helps us grow. By going out of our comfort zones, breaking our routines to do this small, special thing, our hearts will feel fuller. By educating people who don’t know about HD, and then filming their “slice,” we are enlarging our community. Sharing in the creation and success of this special event will open us up to pursue even greater opportunities later.
8. Pi Day increases faith in a cure. If we didn’t believe on some level there will be a cure for HD, we wouldn’t have a reason to participate in this event. And the more faith the people who I mentioned in all the preceding numbers have that a cure is imminent, the more positive energy is focused on that outcome and actions will begin to move toward that outcome.
9. Pi Day is a great way to expand your circle of friends. (Especially the ratio of your circle’s circumference to its diameter.) As you talk to people who aren’t familiar with HD, they will know you are not “horrible” and that in fact you are a beautiful, strong, resilient person. Realizing that, they will do anything to help you, including but not limited to making a Pi Day video with a “slice of HD awareness.” You might make lifelong friends who “get” you.
10. Pi Day 2015 offers a unique window of opportunity to get our stories out there. The symbol Pi will be in the public consciousness more than ever before because of its relationship to the calendar. This is one of those times to SEIZE THE MOMENT and inundate the internet with HD Pi Day video “slices of life.”
Post your video on
whenever it is March 14th where you live. If you upload it elsewhere, please tag it with #PiDay or #HDpieinthefacechallenge so I can find it and link it to that page.
Share this post with everyone, especially the folks I mentioned in #6.