At Last (updated)
“Dear Mr Farque,
Thank you for your e-mail.
NeuroSearch would be happy to provide pridopidine, free of charge, to your father under an expanded access program in the US…”
So reads the beginning of an email from NeuroSearch’s Huntexil Clinical Project Leader. This is perhaps the best news we’ve had since my father’s noticeable improvements during the trial.
For those that have kept up with my sporadic postings you know that my father participated in a drug trial for a Huntington’s Disease drug last year. We drove back and forth to Dallas, Texas (four hours one-way) 12 times so that he could participate. Now we are some months after the trial and my dad has been struggling with further decline. Now, though, he is finally going to be able to receive renewed Huntexil treatment under the FDA’s “single patient Investigational New Drug (IND) program.
Obviously my family is very excited at the prospect of his getting back onto this drug. My mother is working with our family physician to coordinate the drug’s delivery to us. More information on that process and how my father does once he’s back on the drug as it becomes available.
Huntexil is no silver bullet, no cure for Huntington’s Disease, but while on it it did provide him with better balance and coordination as well as increased cognitive abilities.
For those with family members with Huntington’s Disease, even if their symptoms aren’t severe, I encourage you to apply for the drug trial for Huntexil. The trials in the USA have progressed slowly due to lack of participation. If you want to talk to others that have been through the trial, or read about my family’s experiences, see my mother’s postings as “Maggie” on the HDAC forums here.
UPDATE: NeuroSearch has recently posted this update on the Huntexil trials.
March 30th, 2010 at 6:20 am
That is excellent to hear mate! It is excellent your father will be receiving the medication in a lot easier than you have been. Not that in any family illness situation it is ever a burden.
I wish you guys all the best!!!
PS: You are a folding hero, and an inspiration to all.
March 20th, 2010 at 5:01 pm
Wish your father and family the best.
God bless.
February 11th, 2010 at 10:00 am
Just wanted to let you know that I just passed 1 million points. That’s a rounding error for you, but I’m trying to do my part. Just upgraded my fileserver with a quad-core AMD Phenom and 4 TB of RAID-5. Keep foldin’!
February 5th, 2010 at 1:07 pm
Great news!! Hope the pills come soon and that you don’t have to drive to Dallas to get them. Although you’ve got that new car…
January 30th, 2010 at 10:03 am
Have you tried tetrabenazine (Xenazine)?