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Help Us Promote GBS and CIDP and our Foundation We received this inspirational email from Jeffrey Zschunke at our International office on August 4th,2008 about his bout with GBS, his road to recovery, and his awesome way to promote and spread awareness about GBS/CIDP and our Foundation. In turn we are helping to promote his movie, that is in the running to win an online contest at www.reelrocktour.com please go to the website and vote for "Back On My Feet". Here is Jeff's email: HEY EVERYONE,
So...Let me see...how do I start. Most of you remember how back
in October of 2006 I became really ill with Guillian-Barre Syndrome.
I was hospitalized, spent time in rehab, etc. Anyways, It was
a really important experience of my life that I went through.
I learned so much about whats really important, etc.
So fast-forward to my recovery. Most of you know how important
rock climbing was to me before I was sick... and those closest
to me know how much that passion helped me in my rehab and getting
stronger post illness. To say my passion for climbing increased
after my illness would still be an understatement. Throughout
the year following my recovery I spent a lot of time thinking
and trying to process the whole experience. I knew I wanted
to find a way to not only tell about what happened to me, but
also spread awareness for GBS. Armed with my trusty MacBook
and camera, I thought it would be fun to make a short climbing
video. It was a lot of fun to make and Elle did a great job
helping out and giving input.
Making the video was also very therapeutic for me. So...blah...blah...blah...come
on Chunky get to the point...well here it is... I decided to
enter the film into a national climbing film competition, The
Reel Rock Tour, its sponsored by The North Face and other climbing
companies. Its a 100 city film tour that shows the latest climbing
videos featuring some of the worlds top climbers. Honestly,
it took about 30 seconds to enter the contest and I really didn't
anticipate anything.
Well, it has made the finals and is up for voting on the website...
http://www.reelrocktour.com.
Just click on the filmmaking competition Vote Now! link and
look for the film "Back On My Feet". The bottom line is this...
I am completely overwhelmed that this little video that I made
is in the finals. Its nothing terribly exciting. I talk about
what happened...and I climb one of my favorite local boulder
problems (a V0, nothing hard) and thats it. But, it does raise
awareness for GBS and stresses how important this simple act
of going from the bottom of a rock to the top is to me and others
like me.
So, go to the website and vote..it takes no more than 20 seconds.
Watch all the videos, just watch mine, do what you want. If
you like another video better than mine...vote for that one!
I'd be lying if I say "I don't care if I win". I'D LOVE TO WIN
and have my video included on the tour, but if not, I'd just
love for everyone to take a look and drop me some feedback...what
did you think?? did you like it? hate it? Also, PLEASE... pass
it on...forward it with a little message to everyone in your
address book... if you are on facebook, myspace...send out a
bulletin, start a group, etc. I just want to thank my wife Ellen
for spending that afternoon with me and helping film and my
good friend Jeff Rupertus who taught me everything I know about
filmmaking. The rest I learned by making mistakes,haha. So please
vote for "Back On My Feet" at http://www.reelrocktour.com
and pass it on to everyone you know.
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My experience with GBS may have been 10 years ago, but I will always remember it as if it were yesterday. It was an incredible time that has changed my life forever.It was my senior year in high school. What an exciting time. My volleyball team was headed into tournaments and we were expecting another visit to the state finals. Dances, football games, senior pictures, and prom where all in the near future. But apparently there was another plan for me. I woke up one morning fatigued and achy and throughout the next couple weeks. I went to the ER several times which resulted in treatment for the flu. The seriousness of the situation culminated when I was unable to climb the stairs at school and fell asleep in class. I was fatigued and dazed, barely able to crawl out of bed in the days after. Something was very wrong. After a short visit to the emergency room at Akron Children's Hospital in Ohio, Dr. Blaise Congeni had me admitted and treatment began that very evening. By this time, I had succumbed to full-body paralysis and was hardly speaking. IVIG treatment seemed to stop the progression over the next five days. Everything else was blur of pain, frustration, and confusion. I can't tell you how scared and helpless I felt at that time, but some of you may know. I had no control over anything. We didn't know what was wrong or what would come next. Luckily, my mother was proactive and immediately started researching. I remember struggling through therapy, and finally making it home after several weeks. Every recovery story has something special. One last hurtle to overcome. Mine is that I have finally come full circle. Accepting my illness and using it to relate to people on a daily basis. As an Exercise Physiologist and Licensed Massage Therapist, I spend each day working with people struggling with multiple debilitating health issues. Whether using my experience with GBS directly or just being a supportive listener, GBS has given me a new perspective on every situation my days present. It's been a gift in disguise. It has made me humble, appreciative, patient, and understanding. And without GBS changing my life 10 years ago, I would have never grown to be the person that I am today. I'm proud of who've I've become and what I've overcome. I don't think I've gone a day without reaping the rewards of my illness. Yes, you've read that right. Rewards. You're probably wondering why I'm so upbeat about all of this… Without the work of the GBS Foundation International, I would have never had the opportunity to read the latest research and attend support groups. In order to give back, I'd like you to support me during the February events. An update from Stacey I'd like to sincerely thank everyone for making my Myrtle Beach Run for a Reason event so wonderful. First, I'd like to thank the GBS-CIDP Foundation International for making all of this possible. Our endeavor started out with just a phone call to confirm a mailing address and then became an incredible fundraising experience! Thank you GBSFI for your wonderful support and continued efforts to make this possible for others. The web page was amazing. I'd like to thank all the family, friends, and new friends that took the time to contribute to my cause. It takes a kind and caring heart to donate, and you all have done just that. With giving hearts, we truly can receive. So thank you for something so small yet so big. Your donations will yield immeasurable positive results! And finally I'd like to thank my family. My mom (Kathy Baker) and my dad (Bob Baker) have been through so much these past 10 years as I've struggled to break away from the effects of GBS. They've continued to stay strong when I was at my weakest. They've stood by be when things were at their worst. And most of all, they've believed in me. No matter what I've set out to achieve, my parents have invested time, patience, and love for me to succeed. So thank you mom and dad. I love you! Thank
you, Stacey Baker
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Congratulations
to Rachel!
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I fell sick with GBS in March 2006 when I was 23. I was in and out of the hospital for a week with what the doctors thought was a back injury. Then when I couldn't walk and my face went paralyzed I was admitted to the hospital. I only stayed in the hospital for one week before they sent me home. I lived with my parents for a few months so they could help take care of me and I had physical, occupational and speech therapy for about 6 months. I am fully recovered now except for some numbness in the tips of my toes and I get fatigue still. The doctors, nurses and therapists all said that I recovered so well and so quickly because I was young, athletic and determined to get better. Plus I had a lot of support from a strong network of family and friends. When I was in therapy recovering during the summer of 2006 I decided that I was going to run the Detroit Marathon again (I ran it in 2004) to prove I was better. I was too weak still in 2006 to train for or run the marathon so I had to wait until this year. I decided to raise money for the GBS/CIDP Foundation International after having been to the symposium in Phoenix in 2006. Going to that meeting really helped me to realize I wasn't alone and that what I was going through was normal. I sent an email out to my family and friends about two weeks before the marathon explaining that I was running the marathon in order to raise money for the GBS/CIDP Foundation with instructions on how to donate. My boyfriend, Joe, who ran the marathon with me, and I had "Team GBS/CIDP" running shirts made and I also had t-shirts made for our family and friends who came to watch. My shirt read "2006: Paralyzed with GBS, Today: 26.2 Miles, Running because I can!" and the other shirt read "Running for those who can't because of GBS/CIDP" on the back. The marathon was hard but also a lot of fun! We finished in 4:27.42, beating my goal of 4:30.00. I had several people ask me during the race what GBS was and some people who already knew expressed how amazed they were that I was able to run a marathon just a year later. Overall training for this race was a lot harder than the first time I did it because I would get fatigued but it meant much more this time. When I crossed the finish line I hugged my boyfriend and cried and said "I'm not paralyzed anymore." The best part was knowing that I got better because of all the people in my life who helped support and encourage me though. |
2007
Walk-a-thon in Winston-Salem, NC |
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A Walk-a-thon in Winston-Salem, NC was held on
May 19th. |
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2007 Walk-a-thon in Philadelphia, PA |
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A successful Walk-a-thon was
held for the Philadelphia area on June 10th at the Oxford Valley
Mall. |
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2007 Walk-a-thon in San Antonio, TX |
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| A Walk-a-thon in San Antonio was held at Oliver Wendell Holmes HS Track on May 19th. Pictured at the far left is Josie Munoz, the area liaison. |  Click on picture for larger view |
2007
Walk-a-thon in Charlotte, NC |
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What a wonderful “happening” it was! The Charlotte, NC Walk/Run on May 12th was a huge success. The event was spearheaded by chapter liaison Hannah Blanton, with help from many volunteers including Scott Poole, Jeff Walenczyk and co-liaison Kristin Prentiss. There were 344 people who turned out: 158 walked the Miracle Mile, 186 ran a 5K Run – an added event. Charlotte Mayor Pat McCrory welcomed the walkers/runners. The Foundation sends a big thank you to all who participated. The Walk/Run netted about $25,000 for the GBS/CIDP Foundation International and added to the awareness of both GBS and CIDP. |
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| Click on the pictures for a larger view. (Photos contributed by Hannah Blanton) | |||
Making money for GBS/CIDP Foundation International
– and anyone can help!
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| A search engine entitled GoodSearch will send the Foundation one cent for every search made with their search engine. We have checked and double checked GoodSearch and it is 100% legit. GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission… every time you use GoodSearch.com, money is generated for our cause. GoodSearch donates half its revenue, about a penny per search to charities. Now you might think what difference is a penny going to make? Well if 1,000 supporters searched just twice a day, we would receive an estimated $7,300 per year. Remember GoodSearch is powered by Yahoo so you get the same proven, high-quality results. To take advantage of this opportunity go to www.goodsearch.com and be sure to enter GBS/CIDP Foundation International as the charity you want to support. The more people who use this site, the more money we will receive, so please spread the word. Once you set GBS/CIDP Foundation as your default charity all you need to do is get the GoodSearch toolbar for your browser. Thank you in advance for taking a second to set this up and
help us in continuing to make a difference. |
The Holly Building - 104 1/2 Forrest Avenue - Narberth, PA 19072
Phone: 610-667-0131 - Fax: 610-667-7036
Toll Free: 1-866-224-3301
