This past month of my kippitmoving.com emergence, I have been able to network with an unforeseen amount of people, making me a little regretful that I didn’t get my butt in gear and start up this effort years ago. However, as much as I would have liked to connect earlier with this community, I think that this has been the exact time for me, and only just now, am I ready and receptive to the fact that I don’t have to feel different as a bad thing, but embrace this community that I am a part of.
Wow, that was a huge weekend! Through the course of spamming you all with my rambling, Greta and I were given the opportunity to attend the Cure Us PDX event this weekend (exactly a month after I started writing, timing is everything), benefiting Friedreich’s Ataxia Research. Not only was this a successful event in raising awareness and donations for FARA, it served as an invaluable venue for members of our community that are affected by ataxia, to come together and bond as a family. The Cure Us PDX Committee really did an outstanding job, tirelessly putting together the multitude of details in planning and networking (at least a couple years in the making) to pull-off this amazing evening.
It’s not too late to help out!
This event has finished, but I believe you can still donate online, here:
I am also participating in my first rideAtaxia event in northern California, May 30th, and I am raising funds for FARA through my imnotdeadyet team, everyone is welcome to join! For more information, visit our team page for the event here:
Now, for a little refresher, I don’t have Friedreich’s Ataxia (FA), but something like Friedreich’s Ataxia. When it comes to comparison with people having FA, I feel like a tweener (one who doesn’t fall in any category of people). With FA, as far as I can tell, there are some very clear, universal symptoms, but no two people with FA are exactly alike. Severity and onset of each symptom can be varied all over the place with yet to be fully answered explanations, so although I can’t fully relate in every detail, this group gets me. I get them. I had never met anyone with FA, ever, so getting together with the group Friday evening before the event on Saturday, I was blown out of the water. For the first time, seeing other people, similar to me, concentrating with every ounce of their fiber, trying to make the body obey their brains through sheer determination and will, I was able to see the grace in movement, the mind, winning over the body’s own agenda. This is my family, I will be forever grateful to be a part of it, and I look forward to getting to know all of you more!
(Isn’t she pretty? I’m still not sure how I lucked out!)