UK / Europe Vitamin C trials - follow up

April 19, 2006

Hi everyone,

I called the office of Dr. Reilly today at the National Hospital

of Neurology and Neuropathy in London, asking for more information

about the Vitamin C trials.

Basically the status is as follows:

1. An application for grant funding has been submitted for a pan

Europe including UK study of vitamin C on CMT1A

2. Until such time as funding is confirmed, there is a list being

gathered of possible patients to take part in the study

3. The patient list is being made up of Dr Reilly's current patients

4. A genetic confirmation is required to take part in the study

Due to my open file and lack of genetic confirmation, I am now being

thrown back in the UK system for a follow up consultant neurologist

appointment (with the neuro who oversees my file but whom I have

never met) and I will discuss with him the testing as well as the

possibility of a referral to see Mrs Reilly for consideration in the

trials. As we who live in the UK know, it is all a matter of

referrals, appointments and time to see the right doctors at the

right time. I will keep you all posted on the process as it

develops for me.

Best wishes from a London that is turning into spring (at least I

sense that it is as my eyes are itchy from pollen even if the

weather is still not warm!),

Donna

April 19, 2006

Hi Donna,

How are you? I hope all is well out there. I would love to take part of this

research/study about VIT C.

I need to go to the National Hospital very soon and I will ask them

about this possibility. How long have been taking Vit C Donna?

Have a nice day.

Joana

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