MONEY results from the Dystance4Dysonia 5k Run on 9/24/2011 in Dothan, Alabama and corrected day for the Holiday Social in Bimingham, Alabama

First, the Annual Holiday Social will be on December 10, 2011 at the Lakeshore Hospital in Birmingham, Alabama.  It will begin at 11:30.  It is covered dish, so you know there will be some mighty good food there and even better fellowship.  Please send an RSVP to Ken Williams at klwmgw216@aol.com  Due to this, there will not be a meeting in December for DSGA in Birmingham or in Dothan.  So, we hope to all of you on the 10^th!!

Now for the results of the Dystance4Dystonia 5k Run in Dothan, Alabama on September 24, 2011.

We raised . . .

$14,523.00!!!!

This will go towards Dystonia research by way of the Dystonia Medical Research Foundation.  But, there is more news about the monies raised.  There is a donor thru DMRF that is matching new monies raised from (I believe) August through December 2011.  So, this means we will have been responsible for raising more than $22,000.00 for research! 

Is that not fun news!!!!!!!  So, we also owe a huge thanks to all that participated with the run in September.  Whether you gave financially, spiritually or physically, we say thanks.  Also, thanks to the donor that is matching new funds!  That makes it all better!

So, for now, have a wonderful Thanksgiving and Christmas.  Be very careful in all of your travels.  Love your family and friends.  That is just one thing that is very special during this time of year. 

Talk with you later!!!

Troy University Radio and next Dystonia Support Group meeting in Dothan - 11-12-2011

Just some short notes about “goings ons” in the Dystonia Support Group of Alabama world!!  But, fun stuff!!!

First, Tim will be on the Troy University Public Radio, WTSU 89.9 (FM), tomorrow, October 19, 2011 from approximately 3 until 3:30.  Dr. Chan Roark, new found friend through Dystonia, has invited Tim to participate in a discussion concerning Dystonia.  Long story short with Chan, she is the one that found Dothan’s Support Group by way of the Dystonia Dialogue magazine while in Colorado with a friend that has Dystonia.  Confused now!?!?!?  Seriously, Dr. Roark teaches at Troy University and we owe her a huge thank you for helping get the word out about Dystonia.  Here is the web site for WTSU:  http://wtsu.troy.edu/  .  There is a tab for on line listening, so maybe you can listen to the discussion. 

Also, the Dothan Support Group will be meeting on November 12, 2011.  This is the second Saturday in November.  We want to have this meeting so we can reach out to all the new contacts we made during the run on 9/24/2011.  We are also hoping that at that point we will have the final numbers for the run, which looks to be fantastic!!!!!  Please mark your calendars for this date and get ready for the FUN NEWS!!!  I will send out a reminder before that date.

There will be a Christmas Social in Birmingham, but right this second I do not know the date.  As soon as I get a date, I will get that to you.

Have a nice week and we hope to see all of you on November 12, 2011 in Dothan and at the Christmas Social in Birmingham.

Alabama's 2nd Annual Dystance4Dystonia 5k Run results

First, let me apologize for the delay in getting posting the results for Alabama’s 2^nd Annual Dystance4Dystonia 5k Run we had on 9/24/2011 in Dothan, Alabama.  I found (after I had lost) the list of results with the times!  I am just glad I found them.  Dystonia Medical Research Foundation is still working on a final figure for the run, so you will just have to wait for the numbers, but I will tell you we are very proud of what we accomplished.  As soon as we get them, we will get them on the blog.

Now, I must say thanks to all the participants.  What we accomplished could not have been possible without all of you.  This is the list of the people that placed and their times.  I want to apologize right now if I have your name misspelled.  So, thanks to all, again, and we hope to see you again next year!!

Overall Female:

1. Katie Barrentine 25:31

2. Michelle Sheffield 28:06

3. Courtney Noon 28:36

Overall male:

1. Dave Durbin 21:13

2. Phillip Metcalf 22:34

3. Brent Cowen 22:49

10-14 yrs old

1. Cj Anderson 24:59

2. Austin Anderson 30:41

15-19

1. Tucker Poppell 25:06

2. Joanna Hartzog 38:05

3. Brittany Hemphill 38:51

20-29

1. Will Lurie 24:29

2. Jerrica Hall 29:46

3. Natalie Lurie 30:24

30-39

1. Kristi Hickey 28:58

2. Mike Tapley 29:05

3. Robert Shefieeld 29:09

40-49

1. Bobby Jesswein 23:40

2. Johnny Lingo 24:52

3. Malissa Sanders 28:55

50-59

1. Joey Harvey 22:57

2. Kingsley Paquette 24:01

3. Ken McGinity 24:58

60+

1. Ralph Wilson 25:49

2. Henry Reynolds 27:33

3. Carl Griffler 28:57

SUCCESSFUL - Dystance4Dystonia 5k Run - 9/24/2011 - Dothan, Alabama

Good afternoon to everyone!!  I am starting this post on Saturday, September 24, 2011, at about 4:45 pm.  I may not finish it and make it an 'official post' until later, so if you are wondering why you have not heard from us, let me say WOW!!!!

This morning, we had the 2^nd Annual Alabama Dystance4Dystonia in Dothan, Alabama.  Really this all started about a year ago, right after the first ever run of this sort in Alabama. 

Last night, at 6:00 pm, a group met at Covenant United Methodist Church, and finished stuffing runners’ bags, blew up balloons, tied balloons onto sticks, sorted t-shirts, and any other job we could get done before this morning.  Well, of course before we knew it, it was time to get ready and go back to the Church for the big day!  And boy, oh boy, was it ever a big day!

We got to the Church about 6:00 am and when we got there, things were already hopping!!  Before we knew it, it was about 7:45 and the run was getting ready to get started.  From the information I am getting, we had about 105 runners/walkers.  Last year we had about 65 (+/-).  We had about 35 to pre-register and last year we had about 10 to pre-register.  As we were watching the pre-registration numbers go up, we sort of panicked and rounded up bags from last year, in case we had more than 125, which is the number we were guessing about.  YEAH, we know, we were cutting that close.  You should have been here.  You would have been rounding up left overs from last year, too!!  But, as we have already discussed, what a wonderful problem to have, especially when it is the 2^nd run.  We are very young and hope to get better with age!!  But, back to today’s run!  We made many new friends and got word out concerning Dystonia.  In fact, I am going to share a story that was revealed last night.  A woman that lives in Dothan was visiting in Colorado with her friend, which has Dystonia.  Her friend gave her a copy of the magazine, The Dystonia Dialogue, and asked her to read the magazine and become more educated on the topic of Dystonia.  Well, she saw in the magazine about the Dothan Dystonia Support Group.  She came home to Dothan, contacted Rebecca immediately, and became super involved in the run today!  Now, how about that?!?!?  Be from Dothan, visiting in Colorado, and find a support group by way of a magazine that was being read IN COLORADO!!  I suppose the reason for the story is that we never know where we will be or why we are in a particular place, but there are reasons, and you should act on them.  She was a great help and we enjoyed visiting with her.  She did this in honor of her friend, and we hope he realizes what a good friend she is!! 

Everyone had smiles on their faces the entire time.  Everyone helped out!  No matter how large the job or how small the job, they all add up to being a complete success and it could not have been done without all of the assistance, be it physical, mental or in absence.  We know if you were not there, you were thinking about the endeavor we were trying to accomplish, and accomplish, we did!!

We will be getting numbers together and figured out in the next week or two.  As soon as we hear the final tally, we will get the word out.  However, I will say, I do not believe anyone will be disappointed!!

Again, just like last year, the leftover ice, water, and food was taken to The Ark.  For those of you not aware, The Ark is a local run ministry in Dothan, Alabama for the homeless.  I spoke with my son this afternoon and told him about taking the leftovers to The Ark after the run.  I told him just how good it makes you feel to do a good thing and then you do a better thing after the good thing.  I know that sounds odd in writing, but it does make you feel good to do good things by way of another good thing.

So, for now, I am going to shut this computer down.  Tim and I will be eating an early supper and probably hitting the hay a bit earlier than usual.

Thanks so very much to all of you that helped in whatever way you helped.  It could not be done alone, and you were a part of it.

OH, there are pictures and we will get them out in some way later!! 

Have a great day and we will be in touch later!!

Tim and Virginia Hornsby

6th John H. Menkes Children and Family Dystonia Symposium

Well, hello to all!!

Rebecca and I made a whirlwind trip to the “Windy City” (Chicago), but we had a blast!

We attended the Dystonia Medical Research Foundation’s 6^th John H. Menkes Children and Family Dystonia Symposium in Chicago.  We left my house on Friday morning at 4:30 and got back to my house at 1:00 Sunday morning.  With my complaints about the quick trip, it was an absolutely spectacular experience. 

We met some of the most courageous people young and old.  We met people that have had Dystonia for about 40 years and some that have been diagnosed with Dystonia in the last 3 months.  Some that have had deep brain stimulation (DBS), some that are considering DBS and some that will never consider DBS.  There were some that got around as pretty as you please and then there are those that are forever dependent on a wheelchair and an assistant dog.  I wish everyone could have heard and seen all of the reactions from those that were seeing friends they had not seen, you would think in a century.

The families of the Dystonia patients (young and old) were the most supportive families. 

After the dinner on Friday night, there was a DJ that played music and we had some wonderful karaoke singers.  It was so uplifting to see so many Dystonic patients (regardless of age), along with families or friends dance and sing.  Some that are wheelchair bound, on the dance floor as if there were no wheelchairs in their way.  Parents and/or friends taking some of the patients out of the wheelchairs and dancing with them.  Everyone seemed to be free of whatever type of Dystonia they have been diagnosed.  I know I watched in complete awe at how some of them were so oblivious of their situations and surroundings.  Yet, there was so much respect for everyone’s space necessary for each person to get around.

Rebecca spoke at a meeting on Friday afternoon concerning her involvement with the Dystance4Dystonia 5k Run last year and the one coming up on September 24, 2011.  DMRF’s support of this is great.  They helped so much last year and have upheld that support this year.

Saturday, we listened to many physicians speak on what is going on in the Dystonia world.  After they spoke, there was a question and answer time.  Among the information from the physicians, the questions asked were just icing on the cake.  So much area was covered.

Sadly, we had to leave a meeting at 4:30 Saturday afternoon to catch a flight to Atlanta.  We said our goodbyes and our thank you’s to all involved.  I am not going to try to name everyone, because I would leave someone out.  However, it was all well organized and thought out.  Everyone was treated with the utmost respect.  Rebecca and I also participated in an interview with a film crew.  They are working on a video that should be coming out soon, that will hopefully show everything I have described and more.

So, for now, mark your calendars for September 24, 2011 for the Dystance4Dystonia 5k Run in Dothan, Alabama.  Our next meeting will be on September 10 in Dothan.  Then we will meet on Friday, September 23, to get things set up for the race.  

August 13, 2011 - Dystonia Support Group meeting - Dothan, Alabama

It has been a long HOT summer in South Alabama and all over the United States! 

We are getting ready for the Dystance4Dystonia 5k Run/1 Mile Walk on September 24, 2011.  But, we have to have some meetings to get things better organized.  Our next support group meeting is Saturday, August 13, 2011 in Dothan.  We are ready to see everyone and hear how all of you have been getting along.  We will begin the meeting at about 9:45 and hope to be out by 11:00.  Of course we will talk about what needs to be done for the run.  We are getting excited.  Some sponsorships have already been turned in, but we have many, many more to go and many more people to contact.  We need everyones participation in this HUGE endeavor!!!

So, we hope to see you on Saturday, August 13.  Go on and mark your calendars for Saturday, September 24 for the big run!! 

Here is the link if you would like to register or donate for this meaningful cause:  http://www.dmrfevents.org/event.php?455233

Thanks again for all of your support and help!!

Dystance4Dystonia 5k Run/1 Mile Fun Run- September 24, 2011

We are getting ready for the

2^nd Annual Dystance4Dystonia

5k Run/1 Mile Fun Run Walk

on September 24, 2011. 

Here is a link for the registration form: 

http://www.DMRFevents.org/event.php?455233

Please mark your calendars for this big annual event.  There will be booths with all kinds of information about Dystonia and its many forms.  There will be plenty of Dystonia patients that will be willing to talk with anyone along with family members.  There will also be lots of prizes for all the participants and there will be great food for all the runners and walkers!!

The run will begin at Covenant United Methodist Church in Dothan, Alabama at 8:00 am with registration beginning around 7:00 am.  If you register on line, please check in with registration before 8:00 am.  If you are not able to walk and/or run, your donation would be greatly appreciated.  All of the proceeds will go to the Dystonia Medical Research Foundation and is tax deductible. 

Last year we had runners ranging from North Georgia to Florida with many from throughout Alabama.  It was a very successful run, raising over $10,000 for research! 

If you or someone you know would like to be a sponsor, please contact us at DothanDystoniaSupportGroup@gmail.com  and we will forward all the necessary information to you to become a sponsor.

We will have a Dystonia Support Group meeting on Saturday August 13, 2011 at Covenant United Methodist Church.  There will be signs up to direct you to the meeting site.  Please feel free to attend the meeting.  We will be discussing the run, but we will also be listening and talking about how everyone has been doing.  That is our main interest!!!

Dystance4Dystonia 5k run - September 24, 2011

ATTENTION EVERYONE!

Mark your calendars for September 24, 2011.  This is the big day for Alabama's Dystance4Dystonia 5k run/1 mile walk/run in Dothan, Alabama.  Last year (first year ever for Alabama) was great and we are looking at this year being even GREATER!!  If you have any questions, contact us at DothanDystoniaSupportGroup@gmail.com and we will be in touch.  We are accepting entrance information right now, so just get in touch with us!! 

Our next meeting will be on August 13, in Dothan, Alabama.  We will not be meeting in July, BUT we invite everyone to the Annual Summer Social in Birmingham, Alabama on July 16, 2011.  This is a covered dish meal, which is always EXCELLENT food and fellowship!  Something that always guarantees the favorite dishes cooked by everyone.  Again, contact us at the above email address and we can get the information to you about the Summer Social.

So, until later, we will be busy getting ready for the run.  TAKE CARE and BE CAREFUL!!

Dystonia Support Group meeting - June 11, 2011

We will be meeting in Dothan, Alabama on June 11, 2011.  Our guest speaker is Dr. Linda Marden.  Dr. Marden is a neurologist and her office in Dothan.  We will begin with a meet and greet at 9:30 and begin the meeting around 9:45.  We do our best to have everyone out by 11:30. 

For a reminder, we will be meeting at the Covenant United Methodist Church in Dothan, Alabama.  We will be meeting in the CLC in room 116.  Look for signs. 

We look forward to the meeting and hope to see MANY IN ATTENDANCE!!
Have a good week!

Alabama's Dystonia Awareness Week - June 5 to 11, 2011

DSGA's Group Leader, Pat Wyatt, has once again met with the Governor of Alabama who proclaimed the week of June 5 to 11, 2011 as ALABAMA DYSTONIA AWARENESS WEEK.
 Pat will have copies of the proclamation at Saturday's meeting (May 21, 2011) in Birmingham, AL.  Or we can get a copy to you by snail mail.  Just let us know if you would like a copy of the proclamation to get to your local media to promote awareness of Dystonia!

How better than to use Governor Bentley's proclamation as a way to get publicity of ALABAMA DYSTONIA AWARENESS WEEK.

Next meeting - May 14, 2011, Dothan, Alabama

Hello to all!

We just returned from the Dystonia Symposium held in Birmingham, Alabama yesterday, April 8, 2011.  It was SPECTACULAR!!  Thanks to UAB, Dr. David Standaert, Dr. Harrison Walker, Dr. Natividad Stover and Dr. Matt Ford for giving about 35 people in attendance their undivided attention.  In addition, thanks to Mr. Tom Brannan and Ms. Kate Tully for their participation in getting this symposium organized.  We were also given the opportunity to walk through the labs that are devoted to research on Dystonia and other movement disorders.  It really was a remarkable opportunity to see some of the 'behind the scenes' activity.  And we cannot forget the one that spearheaded the entire idea and that was Mr. Ken Williams.  He is one man that is the most dedicated person to the cause of educating the entire world on the condition called Dystonia!!  THANKS TO EVERYONE FOR A JOB WELL DONE!!

Our next meeting in Dothan, Alabama is scheduled for Saturday, May 14, 2011.  We hope to have a great turnout.  We will have many things to discuss along with seeing how everyone is doing. 

Until then, have a great month!  Enjoy the weather and HAPPY EASTER to all!!

Dystonia Support Group Meeting - March 12, 2011 - Dothan, Alabama

Hello to all of you!!

I hope the weather has been just as pretty for you as it has been for us - MINUS the pollen!!??!!

We are getting ready for the next Dystonia Support Group Meeting on March 12, 2011.  We will be meeting at the Covenant United Methodist Church in Dothan.  We will begin a ‘meet and greet’ at 9:30 am and will begin the meeting at 10:00 am.  We need to conclude around 11:00 am.  This will allow us to get everything out of the building by about 11:30 am.  We will be meeting in the same room – CLC room 116.  We will try to have signs out, too.

I will also be sending out the email about the Symposium right behind this email.  The Symposium will be on Friday, April 8, 2011, in Birmingham.  See what you can do!!

Please attend with an open mind.  There are some things we need to discuss. IF we can, we will all have a 'show and tell' for everyone to share their newest experiences or maybe even new ideas or finds.  Maybe something you do to make life easier for you that we do not know about.  We love to hear all of this!!  You just never know until you hear about it!  So please come in and share.

Please let me know you will be attending by RSVP to this email. 

PLEASE feel free to forward this email to anyone you choose!!  The more there, the meerier and productive the meeting becomes!   Hope to see all of you on Saturday, March 12th!!!

Sincerely,
Tim and Virginia Hornsby

February 19 meeting in Birmingham, Alabama is CANCELLED

We got an email from Ken Williams stating the meeting scheduled for February 19, 2011 in Birmingham, Alabama has been cancelled.  There will not be a meeting in March 2011 for the Birmingham area.  BUT, on Friday, April 8, 2011, there will be a symposium at University of Alabama-Birmingham.  There will be more information coming soon.  MARK YOUR CALENDARS for APRIL 8, 2011.

DSGA meeting - Birmingham, Alabama - February 19, 2011

The following is an invitation to EVERYONE from Ken Williams, Birmingham, AL Chapter:

DYSTONIA SUPPORT GROUP OF ALABAMA (BIRMINGHAM) MEETING

LOCATION:      HealthSouth/Lakeshore Rehabilitation Hospital

3800 Ridgeway Drive

Birmingham, Alabama 35209

(this hospital is located off Lakeshore Drive, East of I65)

DATE:              Saturday - February 19, 2011 - 10:00 AM

TOPIC:             "THE ART OF THE INJECTION"

SPEAKER:        Dr. Natividad Stover, MD

                        UAB MOVEMENT DISORDER CENTER

Dr. Natividad Stover obtained her medical degree from Alcala de Henares University in Madrid, Spain.  She completed her medical residency at the Medical College of Virginia and Emory University.  She also did a fellowship in Movement Disorders at Emory University in Atlanta.

She joined the UAB medical staff in 2003.  Her medical interest in neurology is mainly focused on the physiology, physiopathology and treatment of movement disorders as well as development of new medical and surgical therapies.  She's an important part of the UAB Movement Disorder Center and follows numerous patients with Dystonia, tremor and other neurologic disorders.

                                                                                 

We invite all DSGA members, families & care givers to attend.  Each of us have had various experiences with Botox injections that were unsuccessful and we've all learned that success with BOTOX is more ART THAN SCIENCE.

It isn't often that we, dystonia patients, get a chance to sit in the same room for a couple of hours with a "dystonia specialist" and ask any questions we have as well as critique and interact with such a doctor.

Dr. Stover is giving of her Saturday morning to HELP US BETTER UNDERSTAND our problems, fears, and the whys of when we aren't getting the relief we should be receiving.

DON'T MISS THIS UNIQUE OPPORTUNITY.  PLEASE RESPECT OUR INVITED GUEST SPEAKER BY GIVING HER A LARGE AUDIENCE AND AN OPPORTUNITY A PATIENT RARELY HAS.

WE CAN ONLY RECRUIT THIS CALIBRE OF SPEAKER BY RESPONDING WITH A SIZEABLE AUDIENCE OF PATIENTS, FAMILY MEMBERS & CARE GIVERS.

PLEASE ATTEND!  Refreshments will be served and copies of a new book LIVING WITH DYSTONIA should be available for each of you to take home, assuming the publisher fills our order in time.

PLEASE RSVP to the following email address:   Klwmgw216@aol.com 

Ken L. Williams, Volunteer Director

Dystonia Support Group of Alabama

Chapter of Dystonia Medical Research Foundation

Dothan Dystonia Support Group meeting - February 12, 2011

Hello to all!!

I am sure all of you are fine.  If you are anything like me, things are just now starting to slow down since Christmas and New Year’s has passed.

We will begin our 2011 Dystonia Support Group Meetings on Saturday, February 12, 2011.  After speaking with Covenant United Methodist Church in Dothan, Alabama, we will continue having our meetings there.  We will begin a ‘meet and greet’ at 9:30 am and will begin the meeting at 10:00 am.  We need to conclude around 11:00 am.  This will allow us time to get everything out of the building by about 11:30 am.  We will be meeting in the same room – CLC room 116.  There will be some activity at the Church, but we will not be affected by any of that.  Just find a parking spot and come on in.  We will also try to have signs out, too.

We have missed all of you during the Holidays.  We have heard from a few during this time, but would LOVE to SEE ALL of you at this meeting.  The meeting attendance has been a bit scarce over the last year, so hopefully, we will start 2011 with a HUGE INTEREST AND ATTENDANCE.

Also, there will be invoices mailed out in the next week or so from Dystonia Support Group of Alabama.  The invoice is for 2011 membership dues.  These are being mailed out of Birmingham, Alabama.  If you have any questions, please feel free to let me know.  I will direct them to the correct person for answers.

SEE YOU ON FEBRUARY 12, 2011!!!