Thursday, March 29, 2012

ALS MND Daily News Digest

Motor Neurone Disease Sees Stem Cell Breakthrough
Medical News Today
A breakthrough in a stem-cell programme funded by the UK-based MND Association has greatly improved the chances of developing effective treatments for Motor Neurone Disease (MND) of which the predominant form is Amyotrophic Lateral Sclerosis (ALS).
See all stories on this topic »
Rasheda Ali Is A Force To Be Reckoned With In The Fight Against ...
Daily Markets (press release)
She has traveled the world speaking to families coping with debilitating diseases such as: Parkinson's, Alzheimer's, Multiple Sclerosis, Amyotrophic Lateral Sclerosis (ALS) and Stroke and Spinal Cord injuries. Rasheda's message is encouraging and ...
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Neuralstem ALS stem cell trial interim results reported in the journal, Stem Cells (press release)
Neuralstem, Inc. (NYSE Amex: CUR) announced that safety results from the first 12 patients with amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) to receive its stem cells were reported online in the peer-reviewed publication, Stem Cells, ...
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Wednesday, March 28, 2012

New Graphic

Yep, that's a new graphic. Is "Don't Shrink" legible, or am I being to modern with this?

Monday, March 26, 2012

Mission Inn

It looks like one of the most unattainable of items on my list is coming true: driving a Bugatti.

My wardrobe for the luxury car show
I've been extended an invitation to attend the Festival of Speed at Mission Inn, near Orlando, FL, by Bugatti.

It looks like it will be another whirlwind visit, but I'm already getting excited.

The event is a luxury car show. I'll keep my bank balance a secret from the salesmen...

Many, many thanks to Ellen Austin for helping to make this happen!

Thursday, March 22, 2012

ALS MND Daily News Digest

Roger D. Kornberg Joins Prize4Life's Scientific Advisory Board
PR Web (press release)
Prize4Life, a non-profit organization dedicated to accelerating the discovery of treatments and a cure for Amyotrophic Lateral Sclerosis (ALS), is pleased to announce the appointment of Roger D. Kornberg, PhD, to its Scientific Advisory Board.
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ALS Therapy Development Institute Announces Eighth Annual "The Cure Is Coming ... (press release)
This year, event organizers hope for a record 700 walkers, runners and riders, all who will raise money and awareness of ALS TDI efforts to develop effective treatments for amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease.
See all stories on this topic »

Wednesday, March 21, 2012

Denise Called...

...and told me that my application for a service dog has been approved!

More details to follow...

Tuesday, March 20, 2012

Political Medicine

From The Hill Blog

New hope for our toughest diseases

By Richard Garr, president and CEO Neuralstem 03/19/12 05:47 PM ET
As the saying goes, there is good news and there is bad news.

Here is the bad news: Right now, there are an estimated 5.4 million Americans  suffering from Alzheimer’s disease,  one million suffering from Parkinson’s, over five million who have a disease related to a traumatic brain injury, 265,000 with spinal cord injuries, 30,000 who have ALS (Lou Gehrig’s disease),   and 129,000 who have brain cancer. Over 25 million Americans also suffer from diabetes – about 8.3% of the population – and the problem is growing.

After that, it’s hard to believe there is good news, but here it is: R & D breakthroughs are happening in science and biotechnology at a remarkable pace to deal with these diseases. Biotech companies are on the front lines to find cures for life-threatening diseases. There are currently 800 new treatments being developed for cancer by biotech companies, 300 for heart disease, 200 for diabetes and 100 for Alzheimer’s, according to the Biotechnology Industry Organization. 

Some companies, such as the one I represent, Neuralstem, Inc., are using state-of-the-art stem cell research to attack diseases such as ALS, brain and spinal cord injuries, and down the road, Parkinson’s and Alzheimer’s.
What we need to do now is accelerate this research and speed up the development of new cures for those in desperate need. 
There is new legislation, introduced by Senator Kay Hagen (D-N.C.), to expedite development and access to life-saving medicines by the U.S. Food and Drug Administration (FDA). The Transforming and Regulatory Environment to Accelerate Access to Treatments (TREAT) Act will help unleash and accelerate the biotech promise of developing new cures.

This legislation will enable the FDA to speed up the review and approval process and encourage more investment and innovation to attack diseases that are serious or life-threatening. While not all the diseases mentioned above would be covered by this legislation, the legislation provides a much needed jump start on a new approach at the FDA.

America landed a man on the moon in less than a decade and yet it takes 10-15 years to take a new drug from discovery to treating a patient. Given the pace of scientific change, America is held back and patients are suffering because of the long time lags. Investors and private funders are reluctant to invest with the regulatory barriers placed in their way.  

According to James Greenwood, president of the Biotechnology Industry Organization, “Sixty-one percent of venture capitalists now cite FDA regulatory challenges as having the highest impact on their investment decisions, and 40% expect to decrease their investment in the development of new therapies.”  

The approval process for many of these treatment efforts and drugs is simply unacceptably slow. The TREAT Act will speed it up and have a positive impact on these new breakthrough technologies.  Congress needs to pass it this year.  

Our company, Neuralstem, has seen encouraging signs of a treatment effect transplanting our neural stem cells in the spinal chord of ALS patients. Our trial has included 14 patients thus far. Others have implanted stem cells in the eyes and also seen encouraging early signs for treating various types of macular degeneration.

There are potentially important and specific changes championed by this legislation. Most notable among them is a new “standard” that the FDA may adopt to help speed along approval of new therapies for diseases like ALS. The FDA is encouraged to consider surrogate markers of efficacy; and to allow faster approval. For instance, if Neuralstem were to show that we can keep our patients’ breathing function strong enough to stay off of artificial breathing machines for a significant time, we might not have to wait until the patients actually die, to prove that they lived longer, to offer the therapy.  

If a company such as Neuralstem demonstrates the benefit of a treatment according to the new FDA standards proposed in the TREAT Act, the therapy can be offered sooner and it can begin benefitting patients sooner. In a disease like ALS, where on average patients die around 3 years from diagnosis, time is clearly of the essence.

The FDA simply must keep pace with the safe and effective development of new, innovative, scientific breakthroughs that can literally provide hope for those with life-threatening diseases. The old, bureaucratic ways simply won’t work in the 21st century.  

Garr is president and CEO of Neuralstem, a major biotechnology company doing stem cell research on some of America’s most devastating diseases

Important 36 hours

The Recommendation Committee for St. Francis Service Dogs will meet tonight and decide if I'm a worthy candidate for a dog.

Their recommendation will be reported to the Board of Directors at their meeting tomorrow night, where a final decision will be made.

I'm nervous at the thought of the deliberations and decisions that will be made in the next 36 hours, but, deep down, I do have a good feeling about it...

Please check out the St. Francis Service Dogs website to learn more about what they do:

Monday, March 19, 2012

ALS MND Daily News Digest

FIFA to support Borgonovo tournament
FIFA has announced that it will sponsor the youth tournament of Stefano Borgonovo, the former European Cup winner and Italy international who now suffers from ALS (Amyotrophic Lateral Sclerosis). In a joint venture with the Italian Football Association ...
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Wednesday, March 14, 2012

Benning Reprise

I got my hands on a few more images from Ft. Benning, and wanted to share:

Tuesday, March 13, 2012

ALS MND Daily News Digest

Fresh hope for motor neuron disease (press release)
Motor neuron disease, also called amyotrophic lateral sclerosis, is a neurodegenerative disease which causes the death of motor nerve cells within the spinal cord and brain that are responsible for controlling muscle movement.
See all stories on this topic »


Our podcasts are off to a good start. We've made 4 so far, and over 100 people have listened in.

Got something you'd like to hear me discuss? Let me know in the comments section.

And don't forget, you can use the handy widget to the right to listen in!

Thinking of Jinky

...and the entire Johnstone family


Bike riders can use them to ensure their clothing doesn't get caught in the chain.

Horrible children can flick them at other kids.

I dare say they could be used to tie up a long hair-do.

Or you can wear them.

That's right, Don't Shrink "Fight ALS & MND" bracelets are now available!

Visit "Get Our Gear" for more details!

Monday, March 12, 2012

Daycare Fundraiser

Want an iPad, dinner for 8 at The House Mountain Inn, or a weekend for 2 at The Homestead?

1 raffle ticket is $10, or buy 10 for $90: all proceeds benefit Yellow Brick Road, our daughters' daycare.

Contact me at to buy! know you want to!

Sunday, March 11, 2012


Yesterday was a lot of fun, but, if I'm being honest, today is too nice to spend ages writing about it. So I'm off out to enjoy a great spring day.

For now, here's a pic and video as a teaser...

Saturday, March 10, 2012


Back on the ground, and enjoying good food with fellow adrenaline junkies!

More tomorrow...

Friday, March 9, 2012


With tomorrow's jump, I find myself practicing: jumping off the bottom step, jumping off the curb, jumping in to my chair.

...this parachuting lark is easy

Thursday, March 8, 2012

ALS MND Daily Digest

Fourteenth Patient Dosed in Neuralstem ALS Stem Cell Trial
Citybizlist (press release)
... the second patient to receive stem cells in the cervical (upper back) region of the spine was dosed on February 29th in the ongoing Phase I trial of its spinal cord neural stem cells in amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease).
See all stories on this topic »

Wednesday, March 7, 2012

ALS MND Daily News Digest

EMA grants CK-2017357 orphan medicinal product designation
Pharmaceutical Business Review
Cytokinetics' fast skeletal muscle troponin activator CK-2017357 has been granted orphan medicinal product designation by European Medicines Agency (EMA), for the treatment of amyotrophic lateral sclerosis (ALS), also commonly known as Lou Gehrig's ...
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Fourteenth Patient Dosed in Neuralstem ALS Stem Cell Trial
Sacramento Bee
Neuralstem is in an FDA-approved Phase I safety clinical trial for amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease, and has been awarded orphan status designation by the FDA. In addition to ALS, the company is also ...
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Tuesday, March 6, 2012


yes, those things you place on an envelope. Envelopes being those quaint pieces of folded paper that usually contain some piece of printed communication ca. 1960

My blog is selling two sheets of US first-class stamps! Why? Just one of my silly ideas!

Check it out!

Looking Promising

Our house visit with Saint Francis Service Dogs went well, but we'll need to wait until later in the month before hearing if my application has been approved.

Fingers crossed...

St. Francis

More progress with St. Francis Service Dogs today; their Director is visiting us for a home visit.

I'm not entirely sure what ti expect, but we're all looking forward to the visit!

More to follow...

ALS MND Daily News Digest

Cytokinetics Announces That the European Medicines Agency Has Granted CK ...
MarketWatch (press release)
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that afflicts 20000 to 30000 people in the United States and fewer than 1 in 10000 persons in the EU. Approximately 5600 new cases of ALS are diagnosed each year in the US, ...
See all stories on this topic »
Thinking the Twentieth Century by Tony Judt with Timothy Snyder: review
By Joanna Bourke On the day the late historian Tony Judt lost the use of his hands as a result of ALS (amyotrophic lateral sclerosis, a degenerative neurological disease), Timothy Snyder proposed that the two of them engage in a series of historical, ...
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Amanda snagged an idea from Steve Gleason, and we've started to record some conversations.

The first one is up here. It's also posted on the right of this page.

My brother, Martin, was in town yesterday, so we recorded a conversation that'll be published soon.

The conversations are fun, and I look forward to recording more with my family and friends.

Monday, March 5, 2012


I'm in Baltimore today for another visit with the ALS Clinic at Johns   Hopkins. More of a checkup than anything else, but it's good to have my brother with me...

Friday, March 2, 2012

ALS MND Daily News Digest

Toxins Afloat in Shark Fin Soup?
THURSDAY, March 1 (HealthDay News) — Shark fins contain high levels of a neurotoxin called BMAA, which is linked to neurodegenerative diseases in humans such as Alzheimer's and Lou Gehrig's disease (amyotrophic lateral sclerosis), according to a new ...
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A Passion For The Rainforest Leads Botanist To Fight Human Diseases
Livermore Independent
... is helping to make inroads into one of the most difficult problems in medical research: understanding and treating the neurological diseases Alzheimers, Parkinsons and amyotrophic lateral sclerosis, or ALS, better known as Lou Gehrig's disease.
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Pencil in March 10th

Please use the comment field below to let me know if you want to jump out of a plane with me on March 10th!

Want to liven up a Spring Saturday?

Want a 2 minute face lift?

Want to share a once-in-a-lifetime experience?

I look set to visit Skydive Orange - check out their site for more information

... and don't worry it won't be like this

Thursday, March 1, 2012


Amanda was hesitant to talk about some sad things last night, because we were having such a nice, relaxing evening. She was actually coming back to something I started earlier in the day...


"Peaches," has become my code-word for feeling notably depressed.

There's never one single, specific thing that seems to set me off, but there are consistent themes.

The most obvious one is spending too long pondering the future of my children, Cora and Louise. My mind can spiral in many directions; life milestones that I may miss, enjoyable experiences that I may not see repeated as much as I wish, moments of bliss that have a slight bittersweet hue, watching them grow, things I could do to help guide them, the love I have for them...I could go on for some time.

Not enjoying as much time with Amanda as I'd wish sets me off.

The thought of Amanda raising the girls on her own sets me off.

The thought of the pain that my family will experience sets me off.

My generally cheerful disposition belies these short bouts of depression, but they happen.

I feel the best thing to do is to revert back to the mind-set behind my Indian-Scottish proverb: Never let too much of tomorrow get in the way of today.

...after all, all of those people above are the reason I'm happy, and I want to enjoy every moment.