*GREAT NEWS: The Conquer Chiari Walk Across America event for Northwest Indiana will again take place at Wicker Memorial Park on Saturday, September 18, 2010!!!*
~Registration begins at 10am & Walk begins at Noon~
*To register for the event, please visit: www.conquerchiari.org
Thanks & see you there! =)
April 5, 2010
October 27, 2009
October 19, 2009
Slide Show Under Construction
*Please be aware that the slideshow is quite long and randomly picks photos to show, I will occassionally change them to allow all of the photos to be shown. I am working on making a "movie" type of slideshow, so that they can all be shown on here. I'm trying to add everyone's photos that they've provided me.
Thanks for your patience and if anyone has a better way to show them all, please let me know. Thanks SO much!
Thanks for your patience and if anyone has a better way to show them all, please let me know. Thanks SO much!
October 17, 2009
October 5, 2009
Support Group Meeting
Some of our support group members... a very close group of people who share the feelings, heartaches and triumphs of our illnesses. There is an understanding that many just do not "get", no matter how loving or supportive they are to us. I am SO BLESSED by these great people who show up the first Mondays of the month to share, learn and teach each other.I co-lead this group with Nancy B. She is recovering from decompression surgery & we are all sending our thoughts and prayers to her! We hope to see her back with us very soon! Get Well Soon Nan!
If you would like to join us, we meet on the first Mondays of every month from 7-9pm @ The Center For Advanced Clinical Studies- near Methodist Hospital at: 200 E. 89th Ave. Merrillville, IN. Please email me for more information: vanek4@comcast.net Or just join us at the next meeting in Merrillville!
The First EVER Northwest Indiana Conquer Chiari Walk Across America~
The First EVER Northwest Indiana- Conquer Chiari Walk Across America, took place on Sat. Sept. 26, 2009 and raised well over $26,000 ! And combined with the 30 other walks we raised over $250,000 ! Although the day started off wet and gloomy, over 400 people came out to share in the day & later brought the sun! One young woman could not stop her tears, being overwhelmed with the fact that she had felt so alone, and had happened to find out about the Walk by accident, just two days before. In the words on one woman, "We had been waiting decades for today's event".
After months of unbelievable preparation and craziness in my home, the amazing support, love and help of friends and family... the day had finally arrived! As I took the microphone, I was overwhelmed with emotion as I looked out at the sea of people standing on their feet to hear every word. I was nervous, but spoke from my heart. I looked out and saw people from every part of my life, from the Nurse Practitioner turned friend who supported me from the day of my original diagnosis over 12 years ago, to my own patients, neighbors, classmates from years ago, & amazingly supportive family and friends & a ROCK of a husband who I would not want to be here without. But most of all, I saw the eyes of two incredible teenagers who were looking at their Mom with pride for what had happened that day. The eyes of two children that years before, after several brain surgeries and severe complications, I didn't know if I'd be lucky enough to see them become the beautiful people that they are today! I realized then that every Chiari and Syringomyelia patient there was feeling the same thing with their own stories. We've each had to teach those around us what these conditions were when most of the medical community didn't even know what it was. Together, in this large group, we finally brought attention to this, when alone we could not.
I began the song dedication with "Hero" by Mariah Carrey that was incredibly delivered by Nicole Garza and had everyone silent and many in tears... it was dedicated to all of the men and women who have suffered with these conditions quietly for years... and today were celebrated and honored.
As my family led the Walk, we looked back when we were half way thru, we saw HUNDREDS of people--old and young, following behind us hand in hand, with tears streaming down some faces, happy that people "finally understood" what they were going thru. This is the beginning of better care for us, more Federal Funding, and nobody having to live like they were the ONLY person in the world with this diagnosis!
After months of unbelievable preparation and craziness in my home, the amazing support, love and help of friends and family... the day had finally arrived! As I took the microphone, I was overwhelmed with emotion as I looked out at the sea of people standing on their feet to hear every word. I was nervous, but spoke from my heart. I looked out and saw people from every part of my life, from the Nurse Practitioner turned friend who supported me from the day of my original diagnosis over 12 years ago, to my own patients, neighbors, classmates from years ago, & amazingly supportive family and friends & a ROCK of a husband who I would not want to be here without. But most of all, I saw the eyes of two incredible teenagers who were looking at their Mom with pride for what had happened that day. The eyes of two children that years before, after several brain surgeries and severe complications, I didn't know if I'd be lucky enough to see them become the beautiful people that they are today! I realized then that every Chiari and Syringomyelia patient there was feeling the same thing with their own stories. We've each had to teach those around us what these conditions were when most of the medical community didn't even know what it was. Together, in this large group, we finally brought attention to this, when alone we could not.
I began the song dedication with "Hero" by Mariah Carrey that was incredibly delivered by Nicole Garza and had everyone silent and many in tears... it was dedicated to all of the men and women who have suffered with these conditions quietly for years... and today were celebrated and honored.
As my family led the Walk, we looked back when we were half way thru, we saw HUNDREDS of people--old and young, following behind us hand in hand, with tears streaming down some faces, happy that people "finally understood" what they were going thru. This is the beginning of better care for us, more Federal Funding, and nobody having to live like they were the ONLY person in the world with this diagnosis!
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