Holiday Posts

Folks- With all the shopping and family time, I haven't had a chance to post in the last few days. Training is going well. I'm back at my dad's house where we have a huge park, so I've been using that for hill/trail training. Though today's weather is not "runner friendly," as its been raining all morning. I'd like to avoid getting another throat infection, so I'll sit this one out and use the treadmill. We only have another 4 months! People have been coming through huge with donations. I'm proud to say I'm almost up to almost $700 in donations!!! Thank you so much to everyone who is donating.
Here's a story I saw in a local news affiliate about a guy who tried to climb Everest after being diagnosed with Huntingtons, to raise money for the cause (I wish I had that gumption). Click HERE for the link.
I joined WeAreHD.org which is a social networking site for those who are affected by HD (patients, family, and friends). I figured this would be a great way for me to show my support and also explain what I'm doing to raise awareness. More soon.

More Research Funds

Hey Folks- Here's a story in a local Illinois news source, about Dominican University receiving $600,000 to research an enzyme prevalent in Huntington's and Alzheimer's. click HERE for the story. More later today. I just thought that was an interesting piece of news.

A Cold Tuesday Indeed!

Hey Folks- My apologies for not writing more. I've been so busy with finishing my grad school applications (fingers crossed I get in!). Training has been going really well. I think the few days off last week gave my body some time to rest, and I've already run 15 miles this week (woo hoo). My marathon beard is coming in very nicely as well.
The Huntington's events are coming along well as well. As you know there's the bowling event on January 26th, as well as the concert in February (TBA). I've met a lot of artists around Brooklyn (and have been playing with them) who are interested in performing and helping out the cause. Check out this article when you have a chance. It is a Q/A with the man who discovered the Huntington's Gene. click HERE
Have a wonderful day and I'll post more tomorrow.

quick note

Ok folks- Just a few quick notes. Training was curtailed by my "ailment" this week. It's slowly going away and I'm feeling a lot better today. With exception to work I was more or less bed ridden all week (but did manage a couple runs... Please don't tell my mother or doctor that). Looks like I had a throat infection, and it is clearing up slowly.
At any rate, nothing huge to report right now. Here's a story from Checkbiotech that talks about the stem cell advancement. click HERE for the link. I will have a lengthy report this Sunday after I make some calls and get some stuff done with fundraisers. My apologies, this cold really ravaged my work schedule and immune system, but I'm back (I think!). More later.

Bronchitis (I hope not!)

Well apparently there is a cold-to-pneumonia thing going around, and just to be sure I went to the company nurse this morning, and the doctor this afternoon. The nurse didn't see anything wrong, but my doc gave me some meds, and took one of those swab samples. Hopefully it should be gone by the weekend. I am going to have to lay off the training for a couple days, but will be back on it soon.
Ok there's no news piece today, but I will post one as soon as I get something good. More soon (sorry for the short entries. they will be more cheery and well thought out when I am back to 100%)

Quick notes

Hey Folks- Still battling this cold, but I did train the last couple days. I'm hoping it's just a cold, but it's seemingly getting worse so I am going to the doctors tomorrow.

The Guthrie Family is throwing a Woody Guthrie tribute in Philly for the Philadelphia Folk Society. Here's the link to the story. I got another $100 in donations over the weekend, so it's definitely adding up!

Ok more soon.

Training

Well- I'm feeling a bit better this weekend, though I am slowly losing my voice. I trained very hard yesterday and today, and pushed my long run to tomorrow evening (10 miles!!! here we come!!!). I've been feeling extremely dizzy the past few runs, and I think my body was simply weak from the flu. My goal is to get up to 15 miles by the end of the month, and we're making good headway.
Ok well this was a great weekend for the fundraisers. I think I have a date, January 14th, for our first fundraiser. It's going to be the Woody Guthrie Night. I'm really excited, as this is also my first performance in a really long time. There's also a bowling event going on January 26th w/ the foundation, which I will be attending. I'm also going to set up a race w/ the Road Runners to raise money as well. Well there wasn't much Huntington's news this weekend, but again let's take a moment to thank those who were in attendance at the 12/6 meeting in DC. I hope you all had a wonderful weekend.

A big day for Huntingtons

Well Folks, yesterday the FDA advisory board gave its unanimous OK to Prestwick Pharma's drug, Tetrabenazine, which treats chorea in Huntington's patients. This is a great advancement, as it will allow a number of HD patients with their motor skills and more importantly, everyday tasks. Though the drug causes some side effects, its overall benefits outweigh its side effects.
I'm still recovering from the flu so the race tomorrow is up in the air, but if you see some hilarious pictures up tomorrow, you'll know. I hope everyone has a wonderful weekend. I'll have a much larger post tomorrow or Sunday to talk about upcoming fundraisers. Here is the link to the story about Tetrabenazine

Hurrah!

Well today was a great success! Tetrabenazine got the backing of the FDA government advisory board. The HDSA and caregivers made a compelling argument as many families seek these drugs from other countries (which is unsafe). Though the treatment has a number of side effects, researchers and the FDA board determined they didn't outweigh the benefits. The drug definitely helps people control involuntary movement. We ran a Bloomberg story on this finding, but have been unable to find stories on the web. I'll link you guys up once I find something good.

Training was halted yesterday and today as I got a relapse of the flu. I'm not sure what I'm doing here that is causing me to get sick, but it might be those frigid night runs. Big chill is just two days away! I have to find a toy to donate to the cause. Anyone have any good ideas? More later, and as always look for some pictures from the big chill.

Asthma Attacks

Well I was doing great last night on the treadmill at the gym, and out of nowhere, I stopped breathing. It's good I keep my hands near the STOP button on the treadmill or I was finished. The person next to me was kind enough to stop her work out and made sure I caught my breath. I have to get used to these inhalers.
At any rate, I'm well rested and ready to go again tonight for some more serious training. On to the Huntington's news... We have a "Secret Science Society" at this bar/venue called Union Hall. I'm trying to host a speaker there next month to talk about the new advances in taking skin cells and turning them in to stem cells and what the implications of that can be. I think a lot of people are excited, but unaware of all the implications of this discovery. I'll keep you NYC folks posted on that.
Remember you DC Metro friends that there is a hearing for Huntington's coming up on Thursday. Those in the area please try and go. They could use all the support you can get. I believe you can see information about that in my November 21st post.
Have a wonderful evening.

And thus a new week begins

Good afternoon Folks- I hope everyone had a wonderful weekend. The training is going well. I plowed through a race on Saturday, trained a bit yesterday, and back to the cross training today. As mentioned in a post earlier I am running the "Big Chill," at Rutgers this coming Saturday morning.
Oh I have a news alert set up both on Google and my Bloomberg application. If you guys want to know how to build it on Google please send me a note and I'll show you how. Today's big story is how the Buck Institute is teaming up with Neurobiological Technologies to come up with a treatment for Huntington's! This is a protein centralized study/project that they are hoping to move in to clinical trials. Click HERE for the story.
The fundraisers are going really well. We're up to about $270 bucks. I'm going on my first Road Runners run tomorrow, so I'm hoping to recruit some members to Team Little Flower. Oh, and if any of you have any ideas for a team logo or picture, please do submit. More later and hope everyone has a stellar week.

13th Place!!!

Well Folks, I'm not exactly sure how many people were running today, but I did manage to come in (drum roll) 13th place! And I got a medal! It was a great race and I made some friends w/ the Road Runners. I'm hoping to join them starting Tuesday on their team runs.
Here's an interesting opinions post on Art Technica's blog site. Click HERE for the link. I hope everyone is having a great weekend. I'm resting up this evening A.) B/c it's very cold outside, B.) I have a long run in the morning. Pictures below!

GO UCLA!

Ok this about the only time I'll root for the Bruins, but their Memory Disorders and Alzheimer's Disease Clinic, has a new Huntington's study. Dr. George Bartzokis "suggested in the journal Alzheimer's & Dementia that the breakdown of a type of myelin that develops late in life promotes the buildup of toxic amyloid plaques long associated with Alzheimer's disease. Myelin is the "insulation" that wraps around nerve axons in the brain. " For the whole story please click this LINK
Ok well I hope you enjoyed the pictures before. I seriously do have a penchant for the Chariots of Fire theme song. I'll be taking it somewhat easy this evening, with a quick 25 minute speed run, and some light lifting. I'm hoping to break my time of 27 minutes tomorrow morning, and pace myself accordingly.
I had a rather informal meeting with a text book editor yesterday, and got a good insight in to how editorial decisions are made. They have pressure from all angles in what to include in textbooks and how much to include. I found that b/c of that, a more pro-active approach would be to petition the education board. The meeting wasn't in vain, as I learned a ton and made a friend. I'll keep you posted. I hope everyone has a fulfilling and fun weekend.

Chariots of Fire

Since running the "Turkey Trot" last Thursday my whole life has moved to the tune of "Chariots of Fire." I antagonized my family by running in slow motion all Thanksgiving weekend "humming" the song through the kitchen. At any rate a friend found these pictures online. There's a more serious/pertinent post coming later today. Enjoy.

High Gear

I guess I wanted to give this post an "action movie" feel, so I felt high gear was a fitting title. Yesterday's training went well. I was doing 10 minute miles, and tomorrow's goal is to bring that down and try 9.5 minute miles prior to the race on Saturday morning. As mentioned I'm having "coffee" (or in my case green tea with baby tea leaves) with a text book publisher this evening, and I have a large folder of articles to support my case. If anything I want to know how the textbook editorial process works. I'll let you guys know how it goes.
I'm trying to make a couple recruits to Team Little Flower at the race on Saturday morning. Donations have poured in, and I'm up to $200 from friends and family, well on my way to surpass my goal. The training also continues this evening with some sprints and lifting. And as a complete side note, I haven't touched a drink in a long time. I actually feel somewhat sick thinking about drinking, and I have to be honest, it has given me much needed clarity. More soon.

A few quick notes

Hey Folks- I took a day off from training yesterday as I was ULTRA fatigued. I didn't even realize how tired I was until I fell asleep on my laptop at the coffee shop working on graduate applications at...9:30pm. Back to the grind today after a good 8.5 hours of sleep. As per my work out routine today should be a quick 4 mile run. I'm trying to lower my time down from 9 minute miles.
On the Huntington's side of things please check out this story from the New York Times which talks about the implications of the new advancements in stem cell research. Click HERE for the story. I have a meeting with a text book publisher tomorrow, so I'm hoping that goes well. The goals of that meeting are to see how to assess if there is a need/demand for more information about degenerative diseases in text books. Clearly I will be arguing for it. Wish me luck. More soon.

The Show Must Go On

Sing it Freddie. Good afternoon Folks, I hope everyone is slowly re acclimating to work. Good news here. I'm joining the Brooklyn Road Runners Club in preparation of my race. Check out their site here.
They have a 5k coming up this Saturday morning at Prospect Park, which I will be heading to. I figure I'll get a 5K in on Saturday, and then do a 9 mile monster on Sunday morning. I've been running for 3 days straight, and threw some weight training in there on Sunday. I'll be honest, though my body is feeling extremely fatigued, my endurance is increasing exponentially (that's to say, I'm able to handle the fatigue).
I inquired with the director of the NY HDSA about those "live strong" bracelets (in case there was a Huntington's version), so I could hand them out for donations at my races. I have a few awesome bands/artists on board for the upcoming Woody Guthrie event. More details on that TBA.
Being in News has its merits. I'm meeting with a science publications editor this week to talk about extending sections in textbooks about degenerative neurological diseases such as Huntington's and Parkinson's. Considering there is so much excitement about stem cell research in the science community, I think this meeting will go well. Will keep you posted on that as well.
One last thing. I was scouring the net, and found this testimonial of a Huntington's group. It's sad, but I have so much respect for the guy who wrote it. Click here for the link.

"Sunday Sunday Sunday"

After the run on Thursday I managed to go on a 24 hour "eat fest" that ended Friday afternoon. A glorious, indulgent (however, superfluous) carb loading fest. Attached are two pictures of my number and certificate I received at the "Turkey Trot." There is a clear distinction between the two pictures (a testament to my poor photoshopping skills). Next up on the Race List is the "Big Chill," at Rutgers University on December 8th. This is a huge benefit race, in which every participant will be donating a toy for underprivileged children. Check out this link to run your-self.
I received my copies of "It's a Bird," (graphic novel about Huntington's and Superman) in the mail over the break, and I must say it's one of the best comics I've read in a long time. Steven T. Seagle has stripped-down, raw style that lends well to the sad story. I identified a lot with his character, in that his workaholic nature, distances him from intimacy. That's something I've worked on a lot this year, and I'm able to better manage my time and appreciate the people i love more. My favorite quote is "Because in the end, time together is really all two people... any two people... ever have." So true.

Delightful Friday Post

Folks- I ran my first race! Yes it was a 5k, and it wasn't the BIGGEST race in the world, but I got one of those number things to put on my stomach, and also got a little chip form my shoe that got my time. There were 2127 people at this race and I came in 832nd place. I found out the results of the "Turkey Trot," online today at runningintheusa.com
The funniest part of the results was that they posted me as "Krishnan Vasudevan 37/F." I'm not sure where they procured this information, but it was hilarious. The people at the race were so inspired, kind, and there were so many families out there. I hope my family can be part of a community like that day, someday.
We have some hardcore runs coming up (trails, hills) this weekend. Still working on the first Huntington's fundraiser. For all of you DC folks please check out the last post as there is a hearing you could attend.
I hope everyone had a wonderful Thanksgiving.

Huntington's FDA Trial

Folks- Please find below a message from the director of the DC/NOVA HDSA chapter. If you are available for this hearing please do attend!

Hello one and all --

I am writing to ask for your participation and help in order to try to get the FDA to approve tetrabenazine for the treatment of Huntington's Disease. We know from our researchers that tetrabenazine can help with the chorea brought on by HD. Now the drug is coming before an FDA Advisory Committee in just a couple of weeks -- a crucial step if we hope to get full approval from the FDA subsequently.

HDSA National has asked for our local community's help to make that happen. In order to do that, we need as large a contingent of caregivers, families and people with HD to attend this meeting in a show of support and speak in favor of the drug's approval. Full details are below. The hearing is scheduled for December 6th in Beltsville, Maryland and we hope to get a large turnout -- particularly during the open comment period from 1- 2 pm. Many of you may have already heard about this hearing last week but now we need to find out who might be able to attend.

If you can attend and plan to do so, please let Sean Luis know. Sean is with HDSA's Advocacy Office and he is trying to get a sense ahead of time of how many people will attend from this area. His e-mail is sluis@hdsa.org and his phone number is 800-345-4372 extension 226.

If you have questions, please don't hesitate to contact him or us. And please let us know as well. You can simply write back to my e-mail at MurreyJack@msn.com or you can reach me personally at 202-257-2696.

Finally, please spread the word to those in the DC/Virginia/Maryland area that you know who might not be on this e-mail list but would be interested in attending. We are still developing our e-mail list and we realize word of mouth is as powerful as anything we can do.

Here's more info from a bulletin sent out by HDSA National just a few days ago. It originally wanted to get a head count by this week but they will be just as happy to get confirmation of more names next week.

Thanks for your time and assistance.

Murrey Jacobson
President, HDSA Washington Metro Chapter

FULL MESSAGE TO FOLLOW:



-- FDA Hearing on Tetrabenazine scheduled for December 6, 2007 ---



We have received confirmation that the FDA Advisory Committee hearing for Tetrabenazine (Peripheral and Central Nervous System Drugs) will take place on December 6, 2007 from 8:00 a.m. – 5:00 p.m. at the Sheraton College Park Hotel in Beltsville Maryland. The Open Public Hearing which provides patients, caregivers, physicians, and advocates an opportunity to address the Advisory Committee will take place from 1:00 – 2:00 p.m.

Ideally we would like to pack the Ballroom at the Sheraton with as many HD family members as possible to show support for the approval of the very first drug specifically designated for HD. If you will be able to attend the Open Hearing, please contact Sean Luis, HDSA Advocacy and Family Services Manager, so we can continue to provide you with details about the meeting and how we can maximize our efforts. Email sluis@hdsa.org or call Sean at 800-345-4372 extension 226.

We invite you to provide written statements in support of Tetrabenazine that demonstrate how the drug helped you or your family member. Please send your written statements to Darrell Lyons at the FDA before November 21. Email Darrell.lyons@fda.hhs.gov or fax to 301-827-6776 and please also send a copy of your statement to HDSA so we may also provide them to the FDA during the hearing. Email sluis@hdsa.org or fax 212-239-3430 attention Sean Luis.

If you would like to make a presentation during the open public hearing (space will be limited), please contact Darrell Lyons before November 7th and include a brief statement about what you would like to present, your name and address, and indicate how long you would like to speak. Please let Sean Luis (see contact information above) know if you have submitted a request to speak so we can coordinate efforts to fully address the issues that individuals with HD affected by chorea face daily. It is important to give the FDA a face and voice for those who are affected by the chorea associated with HD.

For those who previously sent letters to HDSA about the impact chorea has had on their loved one, we thank you. Please know that we will be submitting those letters as part of our testimony on behalf of our HD families.

Please know that we will keep you apprised of all developments as they occur. Thank you for your assistance.

Super News

Alright well training is going a bit slow this week, but I'm trudging ahead with a hill run tonight. In the world of genetics there is some AWESOME news. It was reported in Bloomberg News and a number of science journals that there is a new stem cell method that doesn't need to destroy an embryo. Scientists were able to take skin cells and create a heart, brain, muscle, fat and cartilage cells. If they can further hone this strategy, cures for diseases such Huntington's are not off the mark. I attached the NY Times article to this. Check it out here.

Also, I spoke to the president of the HDSA NY, and he mentioned they have a major bowling fundraiser coming up in January. I unfortunately can't run in their 10K in Poughkeepsie as I'll be running another race on T-day morning. I also mentioned to him, my Woody Guthrie fundraising idea, and hopefully that can come to fruition within the next couple months. Now to round up some awesome local artists. Stay tuned.

Training Training Training

Well the hardcore training begins this week folks. We have a 5K on Thanksgiving morning, and I'm super psyched about that. This will be the first time I've gotten an official run in, in a long time. I'm hoping to set up an event in mid December at a local coffee shop to have a number of popular, local Brooklyn artists have a Woody Guthrie night. As some of you know Woody Guthrie passed on Huntington's disease in 1967. He was a huge influence of Bob Dylan, Jack Elliot, Jeff Tweedy, and the list goes on. I will keep you NYC folks posted on that news as the time comes closer.
Here's a link to this really interesting article about genetic mapping. It mentions Huntington's in there, and click this blue link to get there.
I'll have more tomorrow. I hope you all are planning some fun times with the family this coming weekend, as I will be doing the same.

Weekend News

Well thus far we've got a great group and the money has started to slowly trickle in. Thanks to those of you who have been supporting us. There's a cold weekend coming at us, so I think we're going to train indoors tomorrow and get some lifting in, and then have a big run this Sunday. We're shooting for 8 miles, at a 10 minute mile pace.
Sadly there are no good stories today, but, if you're interested a good friend of mine suggested reading this graphic novel: It's a Bird. I just ordered a few copies on amazon, and hopefully it'll be on my Thanksgiving holiday reading list. It's a graphic novel that ties Huntington's and Superman. I won't say anymore but if you're interested check out the wikipedia on it here
It apparently has amazing illustration by Teddy Kristiansen and is written by Steven Seagle (not to be confused with the action superstar Steven Segal).
More later.

5K City

Good afternoon folks- Well the first little/"big" run for training is coming up in a week; yes I'll be running a 5K on Turkey Day. Training was slowed a bit this week due to my cold and applications, but tonight I trudge onward with a 70 minute (7 mile) run. Here's a great article in the Vancouver Sun about Michael Hayden, a US geneticist who pioneered the "predictive testing of Huntington's Disease." He recently won a biotech award (rightfully so). Click the blue link for the story.
I've started coming up with some interesting fundraisers, as that has always been one of my favorite parts about these service missions. If you guys have any ideas on how to raise money for the cause please let me know. Again my goal is to raise $2000, to be me matched by company. Thanks for your ongoing support.

Woo!

So, this is a great day in science. Researchers cloned a monkey with stem cells. Not only is this great news for science, but it's a huge step "closer to the production of patient-specific stem cells to treat life-limiting conditions such as Parkinson's, motor neuron disease, Huntington's disease and cystic fibrosis." Here's the link: Washington Post Huntington's Article. More later.

-Krishnan

A story for you all

Well- the training is going really well. I ran hill after hill last night in the bitter cold. I also went to bed w/ a high fever, and feel like absolute garbage, so I'll take today off. Just a few orders of business: A.) I'm meeting up with a family whose father has Huntington's today; I'm helping them look after their son once or twice a week, B.) I received a number of requests to join Team Little Flower (the most impressive was from a guy who runs extreme adventure marathons across the world), C.) I'm looking for someone to draw the art for the t-shirt (any takers?)

As always I'll leave you with some reading. The first is an article written some time ago about stem cells being used to treat Huntington's:

This second link is a story by one of my favorite authors, and also my best friend, which inspired me to run this race. Her raw, sincere style lends well to this story.
http://www.wm.edu/news/index.php?id=4552

Some places for info

Folks- I'm just taking a break from reading the news and thought I'd throw on a links here. In my last post I forgot to mention where you can find more information. www.hdsa.org is the official Huntington's Disease website, and that'll give you more details on this regenerative disorder along with upcoming events in your town. Below I've a couple links of stories I found while working:

http://www.genengnews.com/news/bnitem.aspx?name=26482741 (a drug company specializing in rare drugs just got a ton of funding!)

http://en.wikipedia.org/wiki/Huntington%27s_disease (oh yes, this is the wikipedia run down of the disease).
Feel free to email me with any questions or comments. Thanks for your support. I had a 65 minutes run yesterday followed by a workout. I've never hurt so much, and I feel a bad fever coming on. More later.
-Krishnan

Week One Down, 23 to Go

Folks- This is my blog to track the progress of my marathon training. As some of you already know I'm assembling a team to run the Trail Dawgs (http://www.udel.edu/johnmack/traildawgs/tc/) marathon in Delaware on April 26th. I'm running to raise money for Huntington's Disease, as this is a very serious illness that is well in need of both funding and awareness. I'm hoping to raise $1000 per team member and have my company match our donation. Along with race I'll be a weekly volunteer at the local Huntington's Disease Society of America (http://www.hdsauny.com/). I'm working with them to hopefully build an outreach program aimed at children who have HD, or whose parents do.
I'd say this was a very successful first training week. Along with doing some speed runs, hills, and cross-training I managed to quit drinking (I caved a bit, but I think from today forward I'm clean until the race). I've been in contact with the president of the HDSA, and hopefully will meet up with him this week. I'm going to go work on some applications and will keep you posted if I find any good articles. In the mean time check this article out (it's great news!): http://masshightech.bizjournals.com/masshightech/stories/2007/11/12/story10.html

More later.