I appreciate all that COTA has done. But I want to make this clear . My family and friends raised over 60,000 for my sons liver transplant and my employer as well we worked very hard and spent money on t-shirts food trucks bounce houses, etc to raise money . We spent money to raise money to have a fundraiser for him. And my son expirenced strokes right after his transplant the major surgery caused him to expirence a metabolic crisis unfortunately and needs more assistance with therapies etc and therapeutic tools / toys to help him improve. And they don't think that is transplant- related. Basically if I would have known how this worked we would have just made a GOFUND me instead. They didn't help us manage a fundraiser all we used was there name for our fundraiser. It a big disappointment. I feel like we were mislead by the CEO before we chose to use them. I am really getting tired of people bsing when it comes to our son. Its like we have the worst luck really. I would really like to know what they plan on doing with bentleys money that is not being used . I asked the CEO if it can go to Bentley's education needs and also he will always need assistance for the rest of his life due to he has some brain damage as well and lost his eye sight as well from his stroke and the CEO said no that is not transplant related. I'm thinking about getting a second opinion because again we my family and friends and job spent money to raise money and months and time for my son who will always need help and assistance.
We worked with COTA for my son's transplant, beginning before the transplant, while he was waiting. When he got his transplant sooner than planned, it was a good thing we had started early.
The thing people should understand about COTA is they do not raise the funds for you. You must have a group of people to do the work. What COTA does and does very well is help you out with the red tape of managing a charity. Since the money raised goes into COTA, as a registered 501(c)(3) you don't have to deal with all the paperwork and tax issues, or decide what the money will be spent on. They guide you through all of that.
COTA will give you a lot of good advice on how to raise funds and will sit down with you and help you estimate how much needs to be raised. Once you set a goal and reach it, COTA manages all the reimbursements for expenses.
Since my son's transplant we have been receiving reimbursements for travel expenses and some medical supply expenses from them with no problems. They have a clear set of requirements to report the expenses and turn around time for reimbursement has been about a week.
I would highly recommend COTA over attempting to "do-it-yourself." They are a dedicated and professionally run group and delivered what they promised.
Review from Guidestar
Our child had a liver transplant. I can not imagine what we would have done without COTA. The COTA staff is not only wonderful to work with but they are so genuinely caring.
Wow, I am really surprised by the other review. We have had a wonderful experience with COTA. I never expected them to raise the money for us. They are only supposed to be there as a support for YOUR fundraising activities. We have found it extremely helpful to have the backing of such a large 501(c)3. We have done several large fundraisers over a year period and have been able to raise almost 100K. When doing a large event and seeking corporate sponsorships, it is absolutely necessary to have a 501(c)3 of some type. I have known people who tried to fundraise without the backing of a large organization and they had a harder time raising large amounts of money. We have found COTA to be extremely helpful with reimbursements. They are confined by IRS regulations, but that would be true of any organization of this type. You cannot expect to take funds and use them for non-medical reasons. My son has a very complicated condition and his care is often "out of the box." We have found COTA to be very helpful with helping us get things approved when they are medically related but maybe not the typical reimbursement. We usually receive the reimbursement checks within a week. You can also submit medical bills to them and they will pay them directly. I cannot tell you how much it has helped to have the extra funds. It has made our life manageable through a very difficult time. We have been reimbursed for over $40,000 in medical expenses in just one year so that should tell you that it is certainly not impossible to get reimbursements. It upsets me that someone would write a negative review when it sounds like they did not have a very good understanding for what COTA actually does.
I would not recommend COTA to anyone seeking to fundraise for their childs transplant. Basically if you are in a terrible financial situation - don't expect them to help. Even though the funds they hold are the funds that were raised for YOUR child specifically by fundraising events. They don't deem the funds as yours. They deem them as THEIRS to do with whatever they please. Good luck getting reimbursed for anything and if you do enjoy the 3 week long wait.
Review from Guidestar