|The inspirational Colm Murray|
IT was hard not to be moved by the excellent documentary on RTÉ's Colm Murray and his battle with Motor Neuron disease, which was aired on Monday night last. The 58-year-old is one of the most popular news or sports broadcasters on Irish television and ...
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|Biogen profit up; 2012 forecast falls short|
On Tuesday, Weston, Massachusetts-based biotech issued a 2012 earnings forecast that was lower than Wall Street expected after several clinical trials, including one for its drug to treat amyotrophic lateral sclerosis, or ALS, enrolled faster than ...
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Tuesday, January 31, 2012
Monday, January 30, 2012
Richie and his clown shoes are taking me up to Hopkins for an appointment. It will mark the end of the pill-popping component of the drug trial, but I'll have a final appointment next week.
We'll need to turn around quickly in Baltimore and get back to Lexington. Amanda and I fly in to Atlanta on Wednesday night as we begin a visit to Ft. Benning. We're attending as guests of Colonel Dougherty and the 316th Cavalry Brigade.
|Visual approximation of me at Ft. Benning|
Honestly, I'm giddy. My itinerary alone gets me excited! How could you not be excited when your day will be made up of events like, "Tank Orientation & Live Fire with the Master Gunner School," or, "Observe Live Fire Demonstration," and, "Opportunity to fire Sniper Rifles, Carbine, etc."?
Amanda and I can't wait to visit Benning, and are honored to have been extended an invitation by Col. Dougherty and the 316th. We're both looking forward to our visit.
Friday, January 27, 2012
Amanda reminded me that I haven't posted a song in a few days, so here's something I've been listening to during my visits to Hopkins
or something a little faster
Thursday, January 26, 2012
Preliminary data reported Jan. 17, 2012, by BrainStorm Cell Therapeutics demonstrate that the biotechnology company's experimental NurOwn stem cell technology has not caused any significant adverse side effects in a phase 1-2 clinical trial in amyotrophic lateral sclerosis (ALS). In addition, clinical follow-up of trial participants indicates that the treatment appears to have improved breathing, swallowing and muscle strength.
"I am very excited about the safety results, as well as these indications of efficacy we are seeing," the trial's principal investigator Dimitrios Karussis said in a BrainStorm press release. “This may represent the biggest hope in this field of degenerative diseases like ALS."
The ethical and safety committee at Hadassah Hebrew University Medical Center (Israel), where the trial is taking place, has granted BrainStorm approval to advance its trial and begin treatment in the next group of participants.
Technology uses participants' own cellsThe newly reported data are based on results from the first four trial participants, who were in the early stages of ALS. Investigators expect to test BrainStorm's NurOwn therapy in eight more people with early-stage ALS, and in 12 people with advanced ALS.
Treatment for the first 12 trial participants involves a single round of multiple injections to the biceps and triceps muscles. Those in the later groups, with more advanced ALS, will receive a single injection into the cerebrospinal fluid via lumbar (lower back) puncture.
The experimental treatment in BrainStorm's trial uses mesenchymal stem cells, taken from the bone marrow, which are capable of differentiating (maturing) into a number of different cell types. In this trial, mesenchymal stem cells are taken from trial participants’ bone marrow, cultured into healthy cells capable of delivering neurotrophic factors (molecules that support motor neurons, the nerve cells that die in ALS) and then readministered to the participants from whom they were taken.
BrainStorm, with operations in both New York and Petach Tikyah, Israel, was granted orphan drug status for its experimental therapy in February 2011 by the U.S. Food and Drug Administration (FDA). (Orphan drug status provides economic incentives for companies to develop drugs for rare diseases.)
BrainStorm plans to add US trial sitesBrainStorm is in early-stage planning to add U.S. trial sites to the ongoing NurOwn clinical trial. Prospective sites include Massachusetts General Hospital in Boston and the University of Massachusetts Medical School in Worcester, Mass.
Neurologist Merit Cudkowicz will lead the Massachusetts General Hospital team. Cudkowicz has received MDA research funding and directs the MDA/ALS Center at Massachusetts General. The University of Massachusetts Medical School team will be led by Robert Brown, a neurologist and former MDA research grantee who preceded Cudkowicz as director of the MDA/ALS Center at Massachusetts General.
Several steps are necessary before NurOwn stem cells can be tested in the United States. These include:
- development of a trial design;
- identification of treatment production facilities;
- completion of a formal collaborative agreement between BrainStorm and the participating institutions; and
- FDA approval of the new trials.
Learn more about the NurOwn trialTo find out more about the ongoing trial in Israel, view Autologous Cultured Mesenchymal Bone Marrow Stromal Cells Secreting Neurotrophic Factors (MSC-NTF) in ALS Patients (or enter NCT01051882 into the ClinicalTrials.gov search box).
You also may contact Dimitrios Karussis at firstname.lastname@example.org, or +972-2-6776939; or Adi Vaknin_Dembinsky at email@example.com, or +972-2-6776939.
Wednesday, January 25, 2012
|Clown for hire|
After arriving at 9am, I'll be leaving at 1:45, as soon as they take one more blood sample.
Richie volunteered accompany me to Hopkins today. I really appreciate his support; not sure about his taste in shoes though.
As soon as 1:45 rolls around, we'll head over for some seafood before making the journey home...
Tuesday, January 24, 2012
- Cayman Islands
- Czech Republic
- Hong Kong
- Isle of Man
- New Zealand
- Saudi Arabia
- South Africa
- United Arab Emirates
- United Kingdom
- United States
Monday, January 23, 2012
The UK company released preliminary data indicating that its Cogane solution had demonstrated efficacy in a genetic preclinical model of amyotrophic lateral sclerosis – the most common form of motor neurone disease. World-renowned Cambridge academic Stephen Hawking, whose 70th birthday was feted globally last week, is a sufferer.
Saturday, January 21, 2012
Friday, January 20, 2012
- Miles travelled: 9045
Collectively, the players I met on Saturday have the following medals and awards:
- European Cup Winners: 3
- UEFA Cup Runner Up: 1
- Scottish League Titles: 42
- Scottish Cup Winners: 40
- Scottish League Cup Winners: 23
- International Appearances: 345
- Young Player of the Year: 1
- Scottish Writers' Player of the Year: 1
- Players' Player of the Year: 1
- Football League Champions: 1
- FA Cup Runner Up: 1
- K-League Champions: 1
- Scottish Player of the Year: 2
- Smiles: Too many to count
I would say I'm looking forward to sleeping in tomorrow morning, but Celtic will be on at 7:30. Time to see if I can get the girls in all the Celtic gear I purchased!
Thursday, January 19, 2012
|Hold it: grip testing|
|Protocol CY 4024|
Wednesday, January 18, 2012
The visit began with a quick barrage of tests (strength, breathing, EKG, and vitals) before we finally got to open the drug packaging. I have an equal chance of getting a placebo, low dosage, medium dosage, or high dosage of the drug.
I remained in the hospital for six hours in order to draw blood at regular intervals, and repeat some tests. As boring as the wait was, at least the view was decent!
|Goodbye Charlotte: turning on to the runway|
I could describe the entire weekend as faultless, but that wouldn't do it any justice...
My Aunt Maureen was waiting for us at Glasgow airport. Smiles were followed by a few tears, and then more smiles. We made a brief pit stop in Bishopbriggs before heading over to our hotel, Menzies, in Glasgow. The stop in Bishopbriggs gave a chance to say a quick hello to Paul and Katy as they prepared to start their day.
We made our way to the hotel to grab a nap and meet two people.
|Signed: a Celtic jersey autographed|
by Peter Mullan
|CQN: Paul Brennan|
You won't be surprised to hear that a nap quickly followed, before a trip out to Bishopbriggs!
The first pleasant surprise of the evening came when my Aunt Mairead, herself journeying from Newcastle to Bishopbriggs, stopped at our hotel to take us to the Nicolson household. I'm not sure I could tell you the last time I saw Mairead, but it was a wonderful surprise to be greeted by her at the hotel, and a real treat for her to make the journey up from Newcastle.
Upon arriving in Bishopbriggs, were greeted by the entire Nicolson family - my cousins Matthew and Stephen had made it out of bed by then, and Katy wasn't rushing to get out the door to school - my Uncle Peter and Aunt Sheila, Aunt Babs, my cousin Susan and her son Liam, my cousin Chris, Trudy Nicolson, and Jim McKenna.
The entire night was great fun. Great company, and a great spirit.
|Yum! (Yes, I took a photo of|
We returned to our hotel and got a decent nights sleep.
|On the curb: Martin, me, and my Dad|
stop for a snap in front of the main stand
|'67: iniside the Boardroom, standing|
before the European Cup
...then we paid a visit to the club shop, and spent enough money to make a noticeable improvement in Celtic's profit forecast for the financial year!
|Old: The Scottish Cup, the oldest trophy |
in football, and current property of Celtic
|Inspired: one of many great quotes|
by Jock Stein, and the source of this
blog's name. The quote hangs in the
tunnel that leads players out to the pitch
|Pitch-side: Dad, me, and Martin|
pose between the dugouts at the
foot of the tunnel
|Meet: Finally meeting James, and|
being joined by Celtic legend
Billy "Cesar" McNeill
|Yum: Another fine meal, this time|
at Celtic Park
Speaking of memorable: we were soon asked if we had time to visit the team downstairs, as they arrived for the game. I have to pass on my thanks to Peter Lawell, Tony Hamilton, Iain Jamieson, Eileen, and everyone at the club that made this possible.
|Emilio, James, dad, Martin, Scott Brown, and me!|
|Meeting Neil Lennon, the Celtic Manager|
To recap; wonderful company, wonderful hospitality, wonderful atmosphere, and some privileged access to the team. And yes, you've guessed it, great seats for the game (James went down a few rows to say hello to Rod Stewart!). In fact, the image below was taken as Victor Wanyama headed in Celtic's second goal (that's James jumping out of his seat on my left)!
Paul Brennan has a good recap of the game here. While it had its ups and downs, the result went our way, and it was a memorable game. I don't think there's anything like the atmosphere at Celtic Park; people shouting and singing from the stands, a slight cold bite to the Glasgow air, the faintest smell of the grass wafting up, and that electric sense of anticipation in the stadium. It was wonderful. And my hat is off to the Green Brigade; we were all a little jealous of the noise you were making and the fun you were having!
Full time brought a final round of hospitality. My Dad and my brother shortly excused themselves to retrieve our purchases from the club shop. It gave James and I a while to ourselves. James, that final conversation really helped to put some kick back in my stride. Thank you.
We retreated to Bishopbriggs one last time. Dad treated us all to a curry, before Paul got us back to the hotel.
Sleeping that night felt like I closed my eyes one second, and then woke the next. As quickly as I woke, it felt like we were in Maureen's car and back at the airport in an equally brief amount of time. And our farewell wasn't dissimilar from our welcome on Friday morning.
|Home: Louise knows what to do!|
Thankfully, our flights home were on time, and half-empty! It wasn't long before we were back in Charlotte, tired, on Sunday evening.
A welcome overnight stay at my Mum and Dad's house followed on Sunday night, before making the journey back home to Lexington.
My deepest thanks to my Mum and Dad, my brother, all our family and friends; those that supported Amanda in my absence, and those that helped to turn the weekend in to such a memorable event.
Tuesday, January 17, 2012
I'm just getting ready to leave for Johns Hopkins with my parents.
The business end of the drug trial begins at 8:30 tomorrow morning. Taking the mystery medication will be followed by six hours of sitting around to ensure there are no adverse reactions.
Thursday will bring for hours of testing before I'm able to leave.
Still working on my post about our trip to Scotland...
Monday, January 16, 2012
Friday, January 13, 2012
But sleep doesn't seem likely on this leg, and the numbers really don't distract me for long.
You see, I'm in a state of confusion.
Barely a moment has gone by where I haven't thought how lucky I am to be experiencing this trip. Thinking of everything that lays ahead in the next two days renders me excited to a degree - as my brother aptly described it - akin to a child on Christmas eve.
But there are fleeting moments where I experience emotions at the opposite end of the spectrum. The first time it happened today was when Darla at the United Airlines counter said our flights may be delayed by a day. In response, I confided in Darla, "You see, I have a terminal illness, and this is the beginning of a dream trip I'm taking with my Dad and brother...we've got to make our journey on time."
I think that was the first time I've looked a stranger in the eye and played my card; the card. It wasn't easy.
It's strange how bringing the good in close contrast with the bad can amplify your emotions. Im a lucky person in so many ways, and then I have ALS. The fine emotional line between those two states is a confusing, almost disheartening place to be. I think a remedy may be in order.
I'll see if I can't daydream my way up out...daydream about the days ahead, my entire family, laughing with Dad and Martin, and recounting this trip to anyone that'll listen and the smiles it will bring. But if we're daydreaming about smiles, then I may just need to focus on my favorites; those belonging to Amanda , Cora, and Louise.
Darla, thanks for shipping us out on time.
Wednesday, January 11, 2012
I've been trying to document my visits to Hopkins, but after visiting CQN, this picture feels appropriate...excuse the backdrop, but today's story simply made me smile.
Hail Hail to all
Off first thing to John Hopkins hospital. While this is technically the first appointment of the drug trial, I won't receive my first dose of the drug until one week from today (D-7).
Looming much nearer on the horizon is what promises to be the trip of a lifetime to Celtic Park (D-1).
Monday, January 9, 2012
My dad and brother will, reluctantly, serve as chaperons on the trip. Arm twisting was involved.
We'll arrive in G-town on Friday, catch the game on Saturday, and fly back on Sunday. Can you say "Jet lag"?
Highlights that I'm looking forward to include a family meet up in Bishopbriggs, making the most of Celtic's hospitality, the chance of meeting the Celtic team before the game, and taking in the game with James Johnstone.
|Celtic parade the European Cup|
All that being said, I'm not going to lie, I hope the Hoops hump Dundee!
Friday, January 6, 2012
Thursday, January 5, 2012
But yesterday was the busiest day the blog has had. 250 visits and over 2,000 page-views.
Now I'll indulge myself by inserting a random piece of music I particularly enjoy! :)
Wednesday, January 4, 2012
It seemed like a good way to make myself available without plastering my contact details everywhere!
The application process can take up to six months, so it seemed best to submit the paperwork sooner rather than later.
I'll need help - well, more help - in the future, and some folks at Johns Hopkins suggested looking in to service dogs.
While I don't need any major assistance right now, I don't find it hard to believe that the time will come when I do. Hopefully me and my canine helper will be fully trained when the time comes.
Fingers crossed while we wait to hear from the folks at St. Francis Service Dogs.
Tuesday, January 3, 2012
- Go faster than the speed of sound
- Drive a Bugatti
- Take the VMI team to watch the Bhoys
- Fire the biggest weapon I can get my hands on (no penis jokes, please)
- Take Amanda to Ring Figure
- Take the Girls to Disney World
- Take Amanda back to Hawaii
- Make Cora and Louise laugh
time for an update...
- One of those items has been achieved - Ring Figure.
- Two are in the process of being set up - Big Gun and Disney
- Making Cora and Louise laugh is an enjoyable work in progress
- One item is off the cards: the NCAA has banned teams from travelling overseas on tours
- Faster than the speed of sound, the Bugatti, and the Hawaii trip are in progress...though Amanda and I are thinking of a trip to the UK in place of Hawaii.
And some additions...
- Go on a fun, short skiing trip
- Do a parachute jump
...more to follow...
We watched it over the holidays recently, and enjoyed it as usual. Then the damn Beach Boys fired up at the end; Amanda lost it, and then I lost it.
We laughed about the meltdown the next day, but I'll remember it because it resulted in one of those lovely long hugs. Those hugs where no-one wants to let go, where you forget where or how you're holding on to the other person, where you communicate without speaking or moving.
Monday, January 2, 2012
The days approaching the end of the holidays have been wonderful. Plenty of time playing with Cora, napping with Louise, and hanging out with Amanda.
I'll state the obvious; I'm not looking forward to going back to work.
Then again, after all the food and drink over the past two weeks, it's a much needed detox!