Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

Mike
**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its toiletoctopus@gmail.com. Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Thursday, December 8, 2011

Suck Feizures Ski Trip 2012: Rocking the Purple


Ski resorts were among the first large facilities, to incorporate and downright encourage, those with special needs to "hit the slopes." There are adaptive ski lessons at a lot of them, and they were vital, for the gains that families with a girl or boy with a big heart have today. I first want to thank them, because while I must continue the journey with a heavy heart, it is a joy to participate in the Suck Feizures Ski's 2012 trip to Big Boulder Resort in Pennsylvania Feb 24-26th 2012. It is going to be a joy to connect with folks met before, as well as others, and "red solo cups" are going to be a part of the mix. This is not a fundraiser in any regard, but rather an effort for and by loving parents, who either have seizures, or love somebody with them. There are going to be folks wearing beautiful Suck Feizures Ski's purple hoodies, as this color denotes epilepsy awareness. The folks at Big Boulder have been helpful, parents in this group have gone the extra mile, to make this event happen.

We shall fall and stand together this weekend. There will be some soreness afterwards, but it is going to be a lot of fun on the slopes. The Comfort Inn at White Haven, PA has been kind enough to work with a loving parent, to make sure the rooms could be affordable, during what is peak season. This is in addition to the willingness of the Big Boulder Resort and the Big Boulder Tavern, making it even more of a possibility for folks, to just get together, and have some fun. That is important in the battle against seizures, because while fundraisers are a necessity, coming together and falling with each other on the bunny hill is as well. It shall be done with love, together, and there will be a lot of folks "rocking the purple," and showing support to the 3% of folks around the world who regularly have seizures. This is even higher in the special needs community, and one in ten of us are going to have a seizure. Many lives have been lost, with regards to a condition called SUDEP, and the pain epilepsy has caused, cannot be measured on any scale. For those whom contend with it, or love someone that has it, each time we go down the slopes, we hope to make you proud.

Would you like to go? It is a public event. You can either go to the facebook group Suck Feizures for more information. Nobody bites there, unless you want us to. Its a group of friendly and funny people, that despite years of heartache and quite a few whom are missing someone due to seizures, just do not understand the meaning of quit but rather of do. Our name is harsh indeed, but seizures are not laughing matter, and that is why we must confront them by helping the charities that so far have been, and continue to ramp up on those efforts. Those are ongoing, and there's much more to come down the pipeline, including a winery Epilepsy Awareness fundraiser event, and also a tour of NIH.(National Institutes of Health). So yes, this weekend is about fun, so please do roll out on Feb 24-26th 2012. In addition to skiing, tubing, snowboarding, falling on our butts, there's going to be arts and crafts, and ice cream social, a free raffle, and fun for all generations at the hotel, and of course the party on Saturday night. A room at the Big Boulder Tavern has been provided, with a view of the resort, a live band will be playing, and a lot of red solo cups, that's right, Toby Keith style, shall be part of the itinerary. Designated drivers are in place, and the key is to have fun, although getting up the next day to ski is going to be interesting. For more information, check out Suck Feizures, and let's rock the purple while finding that cure.

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