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Kenadee Julian's Benefit for CRN
| In Honor of: | Kenadee Julian | |
| City: | Athens, Illinois | |
| Location: | Sherman, Illinois | |
| Date: | 21 Mar | |
| More information: |
Kenadee Julian’s 5K Fun Run
On March 21, we held our first 5k run/1 mile walk to raise money for CRN. With the help of our friends and family, we were able to raise a little over $30,000. We were blessed to have about 200 runners/walkers on a chilly, brisk Saturday morning. Immediately following the race, we held a luncheon and a silent/live auction. The outpouring of love and support was phenomenal. So many people gave so much of their time and talents to make this day a huge success.
Picture 104- back of the pack for the 5k run
Picture 132-Dr. Korine Vlahos and Kenadee Julian
Picture 102-Kenadee starting race with friends and family
 Our 5 year old daughter, Kenadee, was diagnosed with a very rare condition at the age of 1. This rare condition called Cystinosis affects many of her vital organs, such as her kidneys, pancreas, thyroid, brain, liver, muscles, and eyes. Even following a rigorous around-the-clock medication schedule, those affected by Cystinosis will eventually have significant medical issues by early adulthood. Kenadee currently takes 19 doses of medication every day, down from over 30 upon her original diagnosis. She even gets 5 doses every day at 1:30am. Without these medications her kidneys would certainly fail and she would need a kidney transplant by the age of 9 or 10. With her current medication schedule (and her compliance through childhood) we hope that her kidneys will last until she is 25-30. Jan and I have recently become involved with the Cystinosis Research Network (CRN), an organization dedicated to help fund research, education and awareness, and family support. There are only approx. 350-400 people in the U.S. that have Cystinosis! Like most rare disease organizations, CRN has very limited resources to fund research and development. We have committed ourselves to help Kenadee and all those affected with Cystinosis to live longer, healthier, and more productive lives and ultimately find a cure! For more information about Cystinosis, please visit www.cystinosis.org/
With that being said, we are holding a fundraiser on March 21, 2009. Our plans are to have a 5k run and a 1 mile fun run/walk along with a luncheon and silent/live auction at the Sherman Athletic Club, race starts at 9:00am with auction to follow. We would appreciate any donations or merchandise you would like to donate in order for us to raise a generous amount of money for CRN on Kenadee’s behalf. If you are willing to donate, we may include your name or logo on our event t-shirts. Race Form Here>>> www.cystinosis.org/filemanager/file/KENADEE%20JULIAN%20BENEFIT%20RUN.doc
Thank you for your consideration,
Dan and Jan Julian
Todd and Susan Lutz
Jason and Stephanie Upton
Tim and Heather Shipp
Gary and Terry Clack
Betsy Kohl
Jill and Scott Parker
Pamela Roesler
Pastor James and Nona Stuenkel
Dennis and Lindy Wilkinson
Jerry and Doranne Julian
Friends and family at Good Shepherd Lutheran in Sherman
The Cystinosis Research Network is a volunteer, non-profit 501(C )3 organization, Federal Tax ID # 04-3323789.
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