August 14th, 2005

Angie did some research into what the costs and process is to start a non profit to raise funds for coming up with a long term solution to providing the medication, including obtaining and filling out a fair amount of the paperwork. It costs about $500 to submit, which isn’t too bad.

We would like to be affiliated somehow with the ULF as we fell it is a good place to start but is a foundation focused on the Leukodystrophies as a whole and not on CTX itself. While this is good, we fell that we need a concerted focus on CTX in order to achieve our goals of:

  • Raising the money to get an FDA approval for CTX medication
  • Raising awareness of the disease amongst medical professionals
  • Raising awareness in the public on the symptoms to be wary of
  • Being able to lead to early and accurate diagnosis
  • To provide for at the very least, optional screening for new parents for themselves as well as their children
  • Determine how many people go undiagnosed and put into a different category based on the symptoms when looked at from focus solely on the symptoms by themselves

Something else to think about when dealing with CTX is the costs of the above items from a financial standpoint. We also need to communicate those costs as compared to what it costs to care for someone who is serously affected from the medication for treatment of mental health problems, to physical health problems be it related to mobility and circulatory/heart problems.

I would bet that the long term cost of the treatment for these symptoms far outweighs those costs for someone who is caught and treated early though I have no evidence to back this up, logic would seem to indicate that this is the case.

Posted in Updates.