Help Camden Find A Cure

01/11/2024

Good morning,

I have unfortunate details to share with followers of this page who may not have heard already. Help Camden Find A Cure founder, John Sanders, passed away Sunday evening at the age of 58. He was on his way home from a benefit ride when a deer ran out in front of his motorcycle. Arrangement details will be attached to this post for those who wish to attend.

Many of us who have known John for years had the benefit of knowing a man who would do anything he could to help someone in need. This was demonstrated throughout his life to those who knew him, but also displayed publicly. He hosted many fundraisers and events to raise money for organizations like the Cystinosis Research Foundation, which held a special place in his heart due to one of his own sons being affected by that disease. John worked tirelessly to do all he could do to make a positive impact in the efforts to search for a cure, which is how this page and the non-profit was started.

John retired from BASF corporation where his last role was Production Planner in charge of overseeing production scheduling and shipment plans for the Gordon, GA facility. He was a "chalk miner" for life, having worked in multiple positions throughout his tenure in kaolin manufacturing. He also served in the United States Army, was a proud member of the American Legion, and was a skilled photographer and DJ.

Those few details cannot truly sum up the man that John was. John was many different things in his life - but a true friend to those in need is the most accurate way I can describe him.

He loved his friends, his family, and most of all - his boys, tremendously.

If you cannot make plans to attend his visitation and would like to pay respects another way, I am sure he would love for folks to donate to the Cystinosis Research Foundation in lieu of this. To anyone who has ever helped John with an event or made a donation during his time with the non-profit, I can assure you he was forever grateful.

Please keep his family in your prayers during this time and beyond.

-Josh Arnold

https://www.whitecolumnsfh.net/m/obituaries/John-Sanders-55/Memories?fbclid=IwAR1npnK-5T1CW8X_yvaqMrppbQl3W5O3N7R30xwaUY-npPmYV5ZvvRcNBQ8

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05/21/2023

04/25/2023

12/06/2021

Geez how time flies. Camdens what I call a new beginning of life is coming up on December 18th. It's 1 year post transplant and we will be going up on the 21st to get his kidney biopsy done to check for any rejection. It's not many people that is not your family that will jump up and say here take one of my kidneys but this person did it without hesitation and never teetered on his decision. They still want to be under the radar and i will honor their wishes. I do still want to thank them for what they done. Now on to the cure which is looking very promising. I think the 4th person has been transplanted with their own re-engineered stem cells and genes. 2 more will be entered in 2022 and that will end stage 2 of the trial. Then stage will begin with approximately 40 people. So keep our Cystinosis Families in your thoughts and prayers. Have a great week.

01/02/2021

First off I would like to apologize for not updating here as well as my personal page. Camdens surgery went very well actually great. His blood levels are looking great and they are still fine tuning and may have to change one of his drugs out to another type of anti-rejection drug. There is a little concern about his WBC count is climbing so they plan on doing more bloodwork and Amanda will be taking him to give me a break and as well I dont feel good. I have posted a couple of pics but I think Facebook put me in jail because of it being graphic and it is but it shows his new kidney going in and then the length of his incision. Also have a few videos of his first walk his second walk and the walk to ringing the bell to get the hell out of there. Please keep him lifted up in your prayers as we still have a few hurdles to get over. Feel free to ask me anything you would like as I know there are others who wonder about the procedure. Again thank you for all the prayers and thoughts.

11/27/2020

I know some of you have already heard that Camdens kidney transplant will be taking place on December 18th, 2020. I plan on doing a small video so as other families prepare for this journey will know what we as a family go thru on just a small part of this disease but the first to take place probably 95% of the time. I will do my very best to capture as much as I can to share with all of you and as well a couple other groups. Our journey will begin December 10th, 2020 as we do our final 2 test and meet the surgeons and staff and 7 days later we get admitted and 8 days its play ball. During this COVID19 only 2 parents can be with him during the day and 1 at night and all of this will continue thru the Christmas holidays. I will do my best to give updates on Camden as things take place. Please if you believe in God please say some prayers for my son as we begin this journey. Thanks for reading.

11/07/2020

Everything is a go. Waiting for surgeons to schedule transplant.

11/05/2020

Got word from our donor Friday that he is a match for Camden. Still need to finish up with a few labs. He said they should contact him Wednesday or Thursday of this week. Can you place an amount of money for a second chance of life!!

08/12/2019

https://m.facebook.com/story.php?story_fbid=2497249916999950&id=100001448991287&sfnsn=mo

If you walked 1 mile, 5 miles, 57 miles in these shoes, what would you experience? Being diagnosed with a physically and mentally draining rare disease does ...

07/25/2019

This is the disease Camden has. His kidney evaluation goes before the transplant team next month and once it is reviewed by the team they will contact me with what the status is. As of now I will be the first person to be tested as they say I should be a match. I will keep you updated as I get info from the drs. His kidneys are still at 15% and seem to be stable but that can change at anytime and go south. Other than that they said he looked really good but did have some anger and anxiety built up from being bullied at school, but we hope that level of anxiety will drop. Stay tuned as we have some exciting things coming up and that dont include the transplant but fundraisers. Transplants cost families lots of money but Egelston said they work with all transplant patients. Here is a little clip on how cystinosis affects our kids.
https://www.facebook.com/CystinosisUnited/videos/2212467472203990/