LetsCureCP.org
I’m one of the board members of a new non-profit called Let’s Cure CP. We are still very much in the startup phase and I’m very excited about our mission. We are the first and only organization focused on raising funds for research on Cerebral Palsy. There has been a small movement and a number of studies that have been executed over the last few years using stem cell research that have produced some very compelling results but there is very little funding dedicated to CP research. Most organizations related to CP are focused on awareness which is necessary but with the compelling clinical results we need to focus on funding the research.
Speaking of clinical results, one of the founders of Let’s Cure CP participated in one of the most recent studies that began clinical execution back in March. The founder’s son had an adult stem cell transplant using stem cell’s extracted from his own bone marrow and injected to help with the brain. I don’t know if it is actual cell regeneration or has some other function. I do know that I spoke to the founder today and was told that the son is doing increadibly well and starting to advance rapidly. He has improved three reading levels since March, is doing better physically and is doing better overall in school.
The founder also told me that the clinical group who participated in the study has been staying in touch. One of the boys who participated in the study was very similar to Haley and actually told his dad that since they went to Mexico for the study he feels like things are easier and has more energy. That is a profound statement comming from a high functioning boy with CP.
So this raises a question: Should we continue with our plans to have the SDR?
I’ll state right away that we do not have enough information right now to make that decision yet but, I have been prompted to look further into this adult stem cell transplant. I’m going to be following up with some of the other parents who participated in the study and look to see if there are any real options to do something with Haley in the near term. But there are some real questions.
Cancer – From what I know (very, very limited) There is less risk with adult stem cells then there are with embryonic stem cells. That is good but quite honestly I’m not willing to accept much risk in this department and the oldest studies with this type of application in patients with CP is approximatlyfour years old. I need more info on adult stem cell transplant in other other areas of treatment.
Costs – I work for a company mainly to have insurance for my family. Haley is not currently eligable to get insurance independantly. All this is likely to change over time. Befor the recent changes she would have been eligible at 21 for indipendant insurance with the new changes, who knows? That said it will be very expensive to do this type of treatment and it would not be covered by insurance. That means we would have to find a way to pay for it and it is not feasible that I could earn that money quicly, but there are other options such as fund raising, grants, and angles who have an interest. That will take a lot of work and some time to figure out.
Timing – We have a very short window to make this decision in. I don’t like making decisions like this without putting full thought into it. I really need some educated feedback and thoughts from others about what I need to ask and should be concerned about. If this was your child what questions would you ask. What would you want to know. I don’t want to leave a question out because I didn’t have time to think through all possibilities and I don’t want to make a rash decision.
In the end it may be best to continue down our current course of action. Putting off the SDR for another year is not desirable at all. The only reason to do that is if we believe 100% that this new treatment is a better and truly alternative option. The fact is I just don’t know right now.
