Atlas Folding

My father continues to decline, although his spirits are good.  He recently ceased coming to work routinely and is trying to acclimate to staying at home every day.  It seems to be going as well as can be expected, but no one can really relish the loss of mobility.

It’s hard for me to watch his decline and even harder for Mom.  She spends almost all of her waking hours with him and his erratic behavior can be difficult to deal with at times.  Huntington’s is often accompanied by fits of anger and rage, so much so that many patients are institutionalized for that reason alone.  Dad, fortunately, doesn’t have that problem.  As Mom has often said “He’s as sweet as he can be.”, however, as with any symptomatic HD patient he does odd and sometimes aggravating things — these things could be a post of their own!

A day nurse has started coming to the house three days a week to take care of Dad while my mother comes to work and runs errands.  This seems to be going well also, Dad likes the nurse and is able to ask her to do things for him that he would be reluctant to ask the family (shaving, for example).

As for a Huntexil update, it’s not good news.  Here’s my mother’s most recent communication with NeuroSearch:

Dear Ms Farque,

I am afraid I am unable to provide you with a specific timeline, but we are negotiating a contract with a US distributor at this very moment. When we have that in place, we will be able to tell you more and help get the process with the FDA moving.

“…we will be able to tell you more and help get the process with the FDA moving” isn’t good news.  The FDA isn’t currently moving on this compassionate use, so who can really know how long it will be now.

“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.

Well it’s been a while, but I will report that I ended up not purchasing the car from the previous post.  My father, brother and I had a fun weekend driving to Amarillo to have a look at it, but as it turns out it’s not in as good condition as it appears.  Ultimately it simply wasn’t worth what the owner was asking for it.

Instead I ended up purchasing a 1964 Lincoln Continental convertible; not only a fine looking car, but the year that I was born!  I haven’t taken possession of the car yet, but I’ll post some better photos once I’m able to take them myself.

Looking forward to a fun spring and summer of cruising with my dad!

PS: I’ve already ordered tires to replace the blackwalls!

My father, brother and I are taking a little road trip this weekend.  We’re driving from Tulsa to Amarillo to look at a car that I want to buy, a 1956 Continental Mark II.

It’s a manly road trip that I think my father will enjoy.  When Tony was young he built street racers and was known to ignore the posted speed limit now and again.  He’s always enjoyed cars and has always like the Mark IIs.  I look forward to going cruising with him in this car in the spring and summer.

The landscape is a bit cold and brown right now in Oklahoma but the change of pace will do us good.  With luck we’ll be trailering the car back on Sunday.

Atlas Folder passed the one hundred million folding points milestone last night having returned 178,212 work units to Stanford.  At the moment Atlas Folder sits at #10 for the most points ever returned by an individual contributor behind anonymous PS3s, anonymous PCs and some serious long-time heavy hitters like ChasR and wayne.

Thanks for everyone’s support and enthusiasm for my little project over the last few months (approaching a year now!).  In particular thanks to my mother for her cheerleading and appreciation for what I’m doing.

I’m looking forward to 2010 with the release of the nVidia Fermi cards!  200,000,000 here we come!

Jason

I had a wonderful time in San Jose and got to see a lot of really amazing technology both in hardware in software.  The high performance computer market is poised to genuinely explode in the not too distant future.  In case you haven’t heard, that what Jen-Hsun Huang is actually brandishing in my previous post is a mock-up of a GT300 and not the real thing.  It’s been something of a dust-up on the GPU sites.  Personally, while I suppose I do feel a bit duped since I had spent considerable money to be sitting in that chair when I took the photograph, I really don’t care.  The tech is real and is coming and will benefit the science.  Besides, I’ve been to enough trade shows in support of my own company to know that sometimes things just aren’t quite ready in time for the show.

Perhaps the highlight of my trip was the early evening visit that I was able to pay to the Pande Labs.  My friend John Van Arnam who is a post-doc student at Stanford was kind enough to show me around a little bit, introduce me to some of his friends and take me by the Labs.  Afterwards we had sushi followed by gelati with his lovely and charming wife.  What more can you ask for really?

Boo!