MERRY CHRISTMAS!

Well,

Merry Christmas to all of those reading the Dystonia Support Group blog!!!

This is also a reminder that our next scheduled meeting for the Southeast Alabama Branch of the Dystonia Support Group of Alabama is on Saturday, February 12, 2011.

Our prayer for everyone during the Christmas season is that all of you remain careful in your travels and enjoy your time with family and friends!

Merry Christmas and Happy New Year!  See you in February 2011!!

Christmas Social in Birmingham

Just to let everyone know, mom and I will be heading to the Birmingham Christmas Social this Saturday, December, 4 to spend a fun pot-luck dinner with the Birmingham group! We hope that some of you will choose to attend! They have been so instrumental and supportive in all we do down here, we need to try to get up there! If any of you are interested in tagging along with mom and me, let us know! We'd be happy to have the riding buddies! :-) Don't forget, that we won't be having a December or January meeting in Dothan, and our next meeting will be on February 12, 2011....... wow, 2011!!!! Anyway, have a safe holiday season and we look forward to hearing from all of you between now and then!

and the grand total is.....

$10,791 is the grand total for the Dystance4Dystonia run we had here in Dothan! YAY TO ALL OF YOU for all your hard work and efforts! Thanks to all the volunteers and donors that made this possible! Without each and every one of you this would not have happened! I can truly say that this is one of the things I've done in my life that I am most proud of! Thanks to you all!!!!!

finding others

So in the last few weeks we have received contact from a few new people seeking a group to fit in. They, like the rest of us, have been diagnosed with Dystonia and feel alone and are looking for a place to belong! Thanks to a combination of our 5k, this blog, the Birmingham group's website, and others, we have been able to become real to those people! Remember in all of your goings to keep an open mind and an open eye. There is never any way to know who you affect and what you can do for someone else! Welcome all new people with open arms and be willing to share your story! It can change a life!

WOW what an event

So Saturday, October 9, 2010 began at an early 5:00 a.m. at Covenant United Methodist Church setting up tables, water stations, coolers of water, coffee, registration tables, tshirts, raffle tickets and items and MUCH more! We started at about 5:15 a.m. getting all of this ready for the registrants to begin showing up at 7:00 a.m. on the dot and the run to start at 8:00 a.m. on the dot. We were blessed with BEAUTIFUL weather and fabulous people that showed up to walk and run. The final number of participants was #59 and the money raised just on saturday topped $1400!!!!! Add that to the already over $8100 and, that's right, we raised over $9500 for Dystonia research! Not only is this $9500 in the bank but a huge impact for the educating our community in what Dystonia is. Many thanks go out to ALL of the volunteers that showed up and helped set up and break down and a special thanks to Allergan and Medtronics for setting up booths and helping educate people even further about what Dystonia is. I couldn't have pulled this off without each and every person there helping me out. We had volunteers drive as far as 4 hours away and we had runners from as far as 6 hours away. What a way to kick off a "first" in this area! This sets the bar high, and it is so early and I am still recovering but there is already lots of talk about next year! Maybe we can exceed our monies and attendance from this year, huh!?!? Thanks again to you all and thank you all for going the Dystance4Dystonia!!!

~Rebecca

October 9.... here we come

Well a huge thank you to all of you who helped out on Saturday, the 2nd, to start getting everything together for next weekend! After everyone left, we did a final 'walk through' of the route, measured the 5k and the 1 mile, made a 'mental picture' of what everything was going to look like next week and are just hoping for the best! If you will ALL please be at Covenant by 6:30 a.m. to be help final touches of setting up as well as to get t-shirts on and volunteer tags, that would be great. Also, please wear jeans or khakis (whatever makes you comfortable) and be prepared to get a t-shirt that morning to put on. Thank you all again for everything and I will see you Saturday!

"It is really going to happen!!!"

So in came our t-shirts today!!!!! :-)

Prepping for Saturday

Hey everyone! So this morning a really exciting thing happened! I was sitting at my desk at work and a co-worker of mine said, "What in the world is UPS bringing here???" Oh, I was so excited, I jumped up out of my chair and said, "My Dystonia stuff, my Dystonia stuff!!!!! YIPPEE" and so I opened the door for the UPS guy, quickly signed my name on that stupid electronic pad that looks like my 2 year old wrote his name on, and then tore into the boxes! The first box was a box about 3 feet long but only about 3 inches wide and 3 inches deep and i knew that in there had to be our banners and SURE ENOUGH, there they were! 2 banners 5 feet by about 2.5 feet with the Dystance4Dystonia logo and the DMRF logo on it! They are FAB!!!!! The other 2 boxes were, I assumed, going to be all the literature and bags for the runners and I opened a box and get this: THEY WERE ALREADY STUFFED!!!!! They already had all of the Dystonia literature put in them and so all we will have to add to them is the extra stuff we get from local vendors. Here is a picture of the banner..... forgive the 2 year old that dodged into the picture..... I wanted you all to see it and I will see you on Saturday! Please do everything in your power to be there Saturday to help and then definitely plan on helping the 9th! Please do not make me do this alone! This is a group fundraiser and I need everyone's help in making this happen!!!

Whew!

Boy, I sure am glad that is over! Charlie Platt was fun and exciting to do but that sure was early in the morning and I hope that you all were well represented! There was lots of good questions posed and hopefully, some conversations being stirred in the community about the event! I hope to see you all on Saturday or hear from you between now and the 9th!

it's coming together

Hello all! Just touching base for an update! It is all coming together! We are getting things in the mail from Birmingham to put in the runner's packets, I'm having daily communication with Chicago regarding little details, signage has been done, banners have been ordered, t-shirts are being printed, etc! Just really keep pushing the runners! We want an EXCELLENT showing of people to participate!

Charlie Platt

Good morning all! Touching base with you all to let you know that dad (Tim Hornsby) and I (Rebecca Sharp) will be going on the Charlie Platt show Tuesday, September 28, 2010 at 6:00 a.m. to promote the Dystance4Dystonia run and to share the effects of Dystonia. Top of the Morning with Charlie Platt is on Channel 18 - Dothan at 6:00 a.m. We hope you will watch and hope that we represent you all well! If someone would record it, that would be great to keep in our records for the future! ~Rebecca

Preparation Meeting planned for October 2

Just posting on here that we are planning a meeting at 10:00 a.m. on Saturday, October 2, 2010 at Covenant United Methodist Church to begin preparing for the Dystance4Dystonia race that we are having on October 9. We will be preparing runners packets, folding shirts, gathering last minute donations, etc. and will use all the help we can get! Nobody will be turned away! There will be jobs such as sorting and 'stuffing' bags, traveling to donors to pick up last minute donations, preparing all the 'tables' and other logistical jobs! I will try to make sure all of you are out and back at home by the time football gets started. We will be meeting in room 116 of the CLC, the room we always meet in. If you have any questions, reply to this post or email me. Thanks a ton and hope to see you all there! ~Rebecca

Dystance4Dystonia runner registration form

We Have Joined the Internet!

Hello to all! We have finally joined the internet and hope that this will help provide you all the most recent Dystonia news as is applicable to us here in the Southeast along with keeping you updated on speakers, events, and other exciting things coming up in our support group! Please post comments and feel free to keep a running conversation going about anything posted on here through all of your comments! We will try to make sure and keep good, active links to other sites concerning Dystonia that may be of any interest to any of you and feel free to recommend anything to be put on here that you have found helpful! We hope that you are able to utilize this as it is meant and send all of your friends and family here to get more information and to stay informed! Thanks to you all!!!