You know what was so cool for me today? I woke up at 3 AM this (Monday, Jan. 9) morning, groggy, but unable to go back to sleep. Naturally, I logged on to Facebook to make sure nothing world changing had happened since I had fallen asleep three hours earlier.
One of the first things I noticed was the post of an awareness video put together by teen GPer, Megan Kondilas. Megan is an administrator of our Gutsy Teen Lounge support group and has been very active in GP awareness and support since not long after her diagnosis. I immediately posted it on the main G-PACT YouTube page, my personal profile, and in all support groups. Although a number of awareness videos have been done in recent months by individuals sharing personal stories, this one captivated the faces of so many different people all in one and related a common story that we all share. I found it powerful, not only that a teen had put it together on her own time while not feeling well, but that so many people had sent in pictures to get involved in the project in order to increase awareness. The desperation and outcry for attention to our needs was clear.
I started to "like" all of them that were posted in my News Feed, but I think I ran out of energy before I hit them all! My News Feed is loaded with posts and re-posts of this video and people pleading with loved ones to watch it so they can better understand gastroparesis and the devastating effect it has on us by requiring feeding tubes and TPN in many cases, gastric stimulators, and frequent hospitalizations. But it wasn't a video of hopelessness either. It showed that we are still trying to live as normally as possible through images of us performing normal activities and hanging out in everyday environments outside of the hospital setting.
One thing has become increasingly clear to me over the past year especially. G-PACT patients have become a force that can no longer be ignored or blown off. We are passionate. Most of us have never met in person, but we are making an im-PACT across this country and even in other parts of the world. We love and support each other, no matter how far apart we may live. This year will bring about new videos, even more awareness, greater advocacy, new programs, fresh ideas, and potentially some new drugs and further research and funding into Digestive Tract Paralysis. We may have weak guts and weak bodies, but we don't have weak minds or weak spirits. We are here to FIGHT in 2012 harder than ever. Tears streamed down my face as I looked back over 11 years to where we were on August 23, 2001, the first day of official operations. We had hopes and dreams then. We discussed working together to help provide patients with coping mechanisms until a cure could be found, but the possibility of a cure at the time seemed hopeless. The years have been challenging and there have been moments when we have wanted to give up. There have been long stretches when it has seemed like all we have hit is brick walls. However, those hopes and dreams of the original founders have only grown recently as we have seen so many taking the initiative to fight now too. So many are picking up the sun rays with us to help "rays" awareness. As a result, we are starting to get the attention we deserve. TOGETHER we CAN and ARE making an im-PACT!
Keep your eyes open over the next few days as we post information on things that you can do to get involved. Everyone can do something! Whether it is as simple as sending in a picture for a video or the website, being a blogger on our blogspot page, or organizing a 5K for a National DTP Awareness Day, everyone can play a part in fighting these devastating conditions. Stay tuned! Progress is being made. You CAN help G-PACT make an im-PACT! We love our fans!
To view Megan's video, go to
http://www.youtube.com/watch?v=KQ5R4dveLSk&list=PL29E758F12AF2EA04&context=C32ad3c8ADOEgsToPDskKFOXC2onVBfmDgxU0VzKP-
Please pass it around!
Carissa Haston, on behalf of the G-PACT Team
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