NY Bound!!!!!

So this Saturday I will be leaving and heading out to go to cheer on team Dystance4Dystonia at the New York Marathon! This is so exciting in so many ways! First off, we have an amazing team that will be there and I am so proud to be a part of something that has done an amazing job of raising funds and awareness for a disorder that is still so unheard of! Another reason I am excited is that I will be vising New York for the first time ever! I cannot tell you how excited I am about this trip! The Lord has absolutely blessed me to be able to have this opportunity and has blessed me with the means and ability to make the trip! Lastly I am excited because I will be able to do this trip and report back to my friends and family in Alabama next week at their meeting how amazing the trip was! I will be reporting back to my dad who is up and about, getting stronger by the minute, didn't have the greatest results from the Baclofen pump but still moving forward, dad. I am proud to say that he is doing great, his heart and mind are in great places, the Lord is helping he and my mom continue to navigate the quirks of a new normal, and his determination is strong.

I hope that this finds you all well, with the Lord on your side helping you see a perspective in life that you wouldn't have seen before and knowing that there are going to be people running in the NY marathon next week for YOU!!!

Stay tuned for lots of pictures and fun stories from New York!

Moving forward

So lately things have been doing great for dad and his Dystonia (knock on wood!!!). He has finally gotten a deck and ramp put outside the back door and he has really been able to enjoy that and get some fresh air on his own while mom is at work! He and mom have finally established a new form of 'normal' and they have settled in to their life and routine. Dad continues to increase his strength every day and that is nice.

"So what is next, if anything" i have been asked a lot lately. On October 15, dad will return to Birmingham to have another Baclofen Pump Trial Injection. The last injection that was done proved to have minimal results yet absolutely no negative results and yet it was deemed 'ineffective'. Because of this, dad had a long conversation with his neuro as well as a consult with a DBS neurosurgeon who all recommended that they re-hash the Baclofen pump, and re-try it! We are quite pleased with this decision and are looking forward to the appointment on the 15th.

We continue to be positive about the results of the trial injection along with continuing to be confident in every day is a new day and a day that dad can increase his strength and stamina.

Also, don't forget that Jen Devore is going to be running in the ING NY Marathon in honor of dad and all others who have Dystonia and cannot run themselves. If you are so inclined to make a donation, even if small, to the Dystonia Medical Research Foundation to help her reach her goal of $2500 and run with Team Dystance4Dystonia, go here:
http://www.crowdrise.com/dmrfoundationnyc2013/fundraiser/jendevore

We will continue to post and keep you up to date on the trial injection and as always, keep sharing Dystonia with those you know, continue to keep your head up no matter what your difficulties are, and continue to keep dad in your prayers for strength and courage during this journey!

Please Help!!!

Ok, friends! So on November 3, 2013, Jen Devore is running in the NY ING Marathon in honor of my dad and other friends of mine and people all over the world that cannot run because of Dystonia. When doing this, though, the NY Marathon requires a minimum fundraising goal of $2500 per entrant. We are currently at $945 and are really anxious to raise the rest of the money! All the money is going to the Dystonia Medical Research Foundation and their agenda to find a cure for Dystonia!  What Jen is doing for my dad is something I cannot do, run a marathon, but I can surely help her raise awareness and the funds to let her run on behalf of my dad and all the others affected by this disorder.

Now, your part is easy. All you need to do is commit to sponsoring Jen. Please donate as generously as you can by sending in your check payable to the Dystonia Medical Research Foundation to the address below or by going online and make your donation online!

Dystonia Medical Research Foundation
Jen Devore Marathon
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601-1905

crowdrise.com/dmrfoundationnyc2013/fundraiser/jendevore/  

Now if all that isn’t reason enough to donate, I’ve come up with the top 10 reasons to donate!

Top 10 Reasons to sponsor Jen in the Boston Marathon

10. You can sleep in late on November 3 while still funding Dystonia research, while we are getting in to NYC early to work all day to help find a cure for Dystonia.

9. You can transform my sneakers into a money machine as we raise almost $100/mile.

8. Your donation is tax deductible.

7. If you sponsor us, Jen has no excuse to walk or to crawl and will run the entire 26.2 miles.

6. If we do not raise the total $2,500 we have to pay entry fee out of pocket, not including the shame and blech feeling we will get from coming up short!

5. The public can access comprehensive Dystonia information 24 hours a day, seven days a week,

through the DMRF’s web site (www.dystonia-foundation.org). During a time when so much health information is available through the internet, much of which should be viewed with caution, the Dystonia Medical Research Foundation is a dependable resource for accurate, unbiased information.

4. When I was in Alabama this summer, we weren’t sure if the Dystonia had taken away my dad’s full ability to walk again – but it didn’t! Help us celebrate that!!!

3. You can help us make it back to Montoursville, PA where we plan on celebrating the finish of the marathon! We plan to have chocolate - lots of chocolate, which will fuel those last few miles!

2. Jen will have gone through 896 oz. of Gator Aid, 43 Power Bars, 5 pairs of running shoes, a new pair of cross country skis (for winter training) 53 lbs of ice for my knees, 2 bottles of Alleve and all you need to do is send in a check payable to the Dystonia Medical Research Foundation. **some of this bullet point might be an exaggeration to get our point across - LOL**

1. The average diagnosis time for Dystonia patients is a few years! Help us raise awareness to decrease the time of diagnosis and to end the disorder! Let’s put the DMRF out of business by finding a cure!!!

Thanks to all of you for reading, for following my blog, for finding interest in my father's journey, but more importantly, for making even just a $5 donation! It means the world to me, my dad, and everyone else who can't run in the NY Marathon because of Dystonia.

with appreciation for you all!
Rebecca :)