ALS MND Daily News Digest

Observations refute widely held view on causal mechanism in ALS EurekAlert (press release) IMAGE: This is a microscopic image of two nerve-muscle synapses in a mouse model of a human motor neuron disease (amyotrophic lateral sclerosis, ALS) in which nerve-muscle contacts break. Energy-producing organelles... "The methods – both in terms of ... See all stories on this topic »

from the Sidelines

Check out this awesome write-up from Shana Levine, AKA Master and Commander of W&L Athletics!

http://wlusidelines.wordpress.com/2012/02/28/the-conway-cup/

Postcard from Japan

I got a nice postcard from a friend in Japan. It's motivated me to start publishing the nice notes and letters I receive. (Hope that's okay Jeremy!?)

Sunset

I played with my camera and got this; about 4 hours condensed to 4 minutes

ALS MND Daily News Digest

Nature: BrainStorm's NurOwn™ Stem Cell Technology Offers Hope for Treating ... EON: Enhanced Online News (press release) BrainStorm is currently conducting a Phase I/II Human Clinical Trial for Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's disease at the Hadassah Medical center. Initial results have shown that Brainstorm's NurOwn™ therapy is safe, ... See all stories on this topic »

(Graphic: Business Wire) TheStreet.com (press release) SYN is developing, or has partnered the development of, product candidates to treat pulmonary arterial hypertension (PAH), relapses in multiple sclerosis, cognitive dysfunction in multiple sclerosis, fibromyalgia and amyotrophic lateral sclerosis (ALS) ... See all stories on this topic »

'Zumba junkies' raise money for ALS research Helena Independent Record Leah Bernhardt has seen how amyotrophic lateral sclerosis, or ALS, slowly kills. The nerve-cell disease is genetic and runs in her family. Her grandmother died from complications of ALS, which is also known as Lou Gehrig's disease, and her aunt is ... See all stories on this topic »

Have a Weekend

ALS MND Daily News Digest

BrainStorm Featured on CNBC MarketWatch (press release) ... a developer of innovative stem cell technologies for neurodegenerative disorders, announced that NurOwn(TM), its autologous stem cell therapy for amyotrophic lateral sclerosis (ALS), or Lou Gehrig's Disease, was profiled yesterday on CNBC. See all stories on this topic »

The Conway Cup

It's been almost a week since The Conway Cup - www.conwaycup.com

I could blab for an eternity about the day, but I'll simply say that it was a huge success: for me, the football side of things went smoothly and people were having fun; the organizers will point to the funds raised - over $10,000 - and be completely justified in claiming a success.

Humble, deepest thanks to everyone that took part.

Meet Bella

I enjoyed a great visit to Saint Francis Service Dogs yesterday.

Cabell and Denise interviewed me as part of the application process.

Then I got to meet Bella! She had already shown me a number of helpful duties she can perform before I thought to get out my camera. Here she picks up a dropped card, her leash, opens and closes a door, and then demonstrates going for help!

ALS MND Daily News Digest

ALS Thanks Havertown Woman For Volunteering Patch.com The ALS Association Greater Philadelphia Chapter The ALS (Amyotrophic Lateral Sclerosis) Association Greater Philadelphia Chapter shares its praise of Kelly Slipakoff and her selfless work for the association with the Haverford-Havertown Patch. See all stories on this topic »

NV students dance to aid teacher Toledo Blade THE BLADE/AMY E. VOIGT Enlarge | Photo Reprints Northview High School students filled the gymnasium recently to dance and celebrate their mathematics teacher, Melissa Belcher, who learned in late 2010 that she has amyotrophic lateral sclerosis, ... See all stories on this topic »

Miss Cora

22208

Happy Birthday, Princess.

ALD MND Daily News Digest

Without key protein, synapses break up Futurity: Research News (Credit: Fallon Lab, Brown University) The research may be relevant to efforts to treat motor neuron diseases, such as amyotrophic lateral sclerosis (ALS, Lou Gehrig's Disease) and spinal muscular atrophy. "What neuromuscular junctions do ... See all stories on this topic »

Medical Update

from mdanews.orgALS TDI to Test Multiple
Sclerosis Drug in ALS
The MDA-supported ALS Therapy Development Institute (ALS-TDI) plans to launch a phase 2 clinical trial of TDI 132, a compound that modulates the immune system

Article Highlights:

The nonprofit biotech ALS Therapy Development Institute plans to launch a phase 2 trial to determine the safety and tolerability of TDI 132 — also known as fingolimod — in ALS.

Fingolimod (brand name Gilenya) is approved by the U.S. Food and Drug Administration for the treatment of multiple sclerosis. In humans, Gilenya inhibits certain immune system cells from entering the central nervous system, where they can result in damage to motor neurons.

ALS TDI reports that mice treated with TDI 132 showed positive outcomes on several disease measures.

To learn more, read the full ALS News Online article.

als.mda.org
Scott Wiebe
National Director — Outreach Services & ALS Division



World Leader in ALS Research and Services

Ms. Sherman

I had a quick visit to RCHS today, where my wife teaches. We were both guests of Ms. Sherman's 3rd period leadership class.

Amanda had actually met with the students, but I wanted to go along and meet everyone.

The students in Ms. Sherman's class heard of my situation, and want to do some things to help.

After hearing my story, they offered to sell tshirts, bracelets, and host lunches to raise funds for our family.

Talk about a wonderful, thoughtful, kind, spirited gesture...

ALS MND Daily News Digest

The ALS Therapy Development Institute to Launch Phase II Clinical Trial of TDI ... MarketWatch (press release) About ALS Therapy Development Institute ( www.als.net ) The mission of the ALS Therapy Development Institute (ALS TDI) is to develop effective therapeutics that slow or stop amyotrophic lateral sclerosis (ALS, Lou Gehrig's disease) as soon as possible ... See all stories on this topic »

Concussion In Contact Sports (VIDEO) Huffington Post At the age of 34, he is also living with a debilitating disease, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease. And he's not alone. A recent story in Scientific American profiles Kevin Turner, called "the collision expert," ... See all stories on this topic »

Busy

I'm slacking with my blog this week. I'm trying to do what I can to help with the planning of The Conway Cup.

With the schedule complete, and everything falling in to place, I really hope to be able to soak up as much of the day as I can.

ALS MND Daily News Digest

Tony Proudfoot's presence lives on Montreal Gazette The steps have been small for Vicki Proudfoot, somewhat painstakingly taken, in the nearly 14 months since the death of her husband, Tony, to amyotrophic lateral sclerosis (ALS) - the degenerative disease that paralyzes muscles of the body. See all stories on this topic »

Lion Transplant

After a hectic few months, I was finally able to visit the guys on VMI's football team yesterday.

I've felt that seeing them has been medicine for my soul: it feels good to be around so many energetic, fun people. Seeing the guys yesterday just reinforced that sentiment.

I brought back a gift from my trip to Scotland; a framed poster of the Lisbon Lions.

There's an obvious connection there, since Celtic is my team. But there's also a deeper connection. As I mentioned in earlier posts, Celtic's greatest ever player, Jimmy Johnstone, passed away from the same illness I have. I felt that his story and that of the Lisbon Lions deserved to be heard by the guys at VMI...

...so the following posters will now hang in VMI's locker room...

Jimmy spins away after scoring against Rangers

Jock Stein (R) and John Bonnar out for a jog.
Big Jock was Celtic's most successful manager

Billy McNeill lifts the European Cup

The Lisbon Lions parade the European Cup

My words to the team

The poster of the Lisbon Lions now hanging in the locker room

3WZ FM

Thanks to Jim for being a gracious host and helping spread the word about The Conway Cup

Trials

Well, that's my participation in this phase complete. Should the drug progress, there are two more research phases before it will be approved by the FDA.

I won't miss the frequent trips to Hopkins, and I'm sure the staff won't miss my dry sense of humor.

Still, it feels good to have contributed...

Song of the Day

Questionable headdress aside...

WSLS

ALS MND Daily News Digest

Kubly back in action at the Capitol Granite Falls Advocate Tribune The message was reported to have choked up colleagues on both sides of the aisle, in light of the 68-year-old senator's battle with amyotrophic lateral sclerosis (ALS), or Lou Gehrig disease. "I would like to thank all the members and the staff who ... See all stories on this topic »

Father Leaves Lasting Legacy to Families Affected by ALS Patch.com VCCF Greg Merfield passed away in January at the age of 51 from amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. But before he died, the Agoura Hills dad wanted to leave behind a lasting legacy. Diagnosed at the age of 49, ... See all stories on this topic »

Shooting a TV Spot

WSLS Ch 10 came to visit today. Lindsey Ward and Greg swung by to shoot a piece for their "Making a Difference" segment.

We had a good discussion about me, ALS, and people helping to make some of my dreams come true.

It was a really nice experience, and I'm excited to see the segment on tonight's show (7pm)!

Please sign this petition

Act to Action - National Alzheimer's Project Petition

Treat 'Em Rough

I've now had two journeys in a row that have commenced with worrying news at the airport check in desk. The Scotland trip was almost cut from 48 hours to 24, and the trip to Ft. Benning began with yours truly on standby.

A wonderful, welcome sight
upon arriving at Ft. Benning

Thankfully, the problems on both trips were resolved; we arrived in Atlanta on time,and were met by our friend, Ben Freakley. Ben has been the catalyst behind this trip, and has overwhelmed me with the effort he has put in to making this possible. He noticed the "big guns" item on my list, and ran with it.

Our breakfast setting

We arrived at Ft. Benning and were met by Specialist Meares at our accommodation, The Marshall House. SPC Meares gave us a gracious, official welcome to Ft. Benning, gave us a tour of the house, and then left us to crash in to bed; the long journey had taken its toll.

SPC Meares returned to the house early on Thursday morning, and was busy making our breakfast by the time Amanda and I made it downstairs. Ben joined Amanda and I to enjoy stuffed french toast before we all headed out for the day.

SFC Helland, me, Ben, and CSM
Mitchell pose outside Patton Hall

SSG Quinten Helland, a Master Gunner, was also waiting downstairs.  SSG  Helland was kind enough to drive the three of us around Ft. Benning for the day. I'm told he also played a key role in arranging our schedule for the day.

We departed The Marshall house for the Command Group Headquarters of the 316th Cavalry Brigade. We were visiting Ft. Benning as guests of Colonel Dougherty and the 3-sixteen. COL Dougherty had been called in to a meeting, but Command Sergeant Major Mitchell was there to greet us at the beginning of what would be a great day...

Welcomed to the range

...we all headed over to Patton Hall. Patton hall receives each new officer and takes them through the rigors of Armor School. The hall was very impressive, and was far more reminiscent of a new, state-of-the-art University building, than anything I had imagined.

We left Patton Hall and headed off for the range. SGT Helland drove us all out to the range where we were met by a large group of personnel, and two M1A2 SEP Abrams battle tanks.

I've seen images of Abrams tanks, and even saw a few dozen parked in storage across from the Brigade HQ, but nothing prepared me for the sight and sound of a 70 ton monster pointing down-range.

Me, SFC Wainwright,
Amanda, and ben

We spent the first half of our visit to the range being given a guided tour of the M1A2 by SFC Wainwright. The best way to describe SFC Wainwright is to point out the number of times he said he had the best job in the world; talking with such intensity about every single aspect of the tank that you wondered if he might be able to talk for hours about just the rubber used on the tank's tread. Or the gyro-scopes uses within the weapons systems. Or the origins of the name of a tank hull. We heard many of his colleagues describe him as simply the most knowledgeable soldier they knew of when it came to the M1A2. Even better was the fact that his passion was contagious; i think all three of us left the tank just giddy about all the things it could do.

Thankfully, we didn't have to wait long to witness the M1A2's most impressive capability.The second tank was in the middle of a training exercise, and we got to witness the 120mm smoothbore main gun firing. The best way I can describe it is to say that you feel your witnessing the birth of lightning; I've never witnessed anything as powerful or loud.You feel the blast reverberating through your feet, and the boom shakes your innards.

The most destructive husband and
wife Ft. Benning has ever seen!

SGT Wainwright completed our tour, and we returned to a tent on the back of the range to change in to some Nomex. While the tank barrel has capabilities to draw gasses out, minor malfunctions could see some of those gasses find their way in to the turret; Nomex protective clothing is worn in case any sparks or flashes also make their way in to the turret.

We made our way over to the second tank. Amanda and I would join SGT Wainwright to help him fire a few rounds, before Ben would trade places with Amanda for the last few rounds.

We had seen the inside of the other tank with SGT Wainwright, but seeing helmets waiting for us in the gunner's seat and loader's seat immediately lifted my level of excitement -- if that were possible!

I made my way down in to the gunner's seat and Amanda climbed down to the loader's seat. SGT Wainwright was in the tank commander's chair, and here's what followed...



The violence inside the tank isn't much compared to the blast outside (Marines in older versions).

We changed out of our Nomex clothing, the sound of the tank still ringing in our ears, and gave heartfelt thanks to everyone for having us on the range and making my dream come true.

Not bad to do all that before lunch!

Mementos from COL Dougherty

We made our way back to 316th HQ and walked over for lunch with a collection of soldiers that had played a role in making the visit possible. We were also joined by Colonel and Mrs. Dougherty.

At the conclusion of lunch, COL and Mrs. Dougherty presented Amanda, Ben, and I with certificate granting us Honarary status as members of the 316th Cavalry Brigade. We also received a coin from COL Dougherty -- a "coin" being a token given by a commanding officer to a subordinate in reward of excellence.

Still a little speechless fron COL Dougherty's kindness, we returned to our transport and made our way to a second range to witness a "Hot-Ex."

Ft. Benning continued to roll out the red carpet for us; we had front row seats for the firepower demonstration.

Bradley fighti

Members of COL Rauhut's 197th Infantry Brigade demonstrated close combat and small arms. COL Rauhut introduced the soldiers that would lead the demonstration before stepping aside. Soldiers gave briefs on the particular unit they were demonstrating, from the M1A2 and Stryker, to the Bradley and the infantry soldier.

After the briefings, the presentation area was cleared in preparation for live fire.

What followed was a deafening barrage of fire; mortars, cannons, .50cals, and various small arms. It was amazing and awe-inspiring...

COL Rauhut continued to treat us like VIPs; we were invited in to one of the Bradley Fighting Vehicles and given the opportunity to see its power up close.

After lighting up targets on the range in the Bradley, we then stepped down to a firing line to try some of the "small" arms on display. I say, "small," but the first rifle I fired was the Barrett  99 - a rifle that shoots .50cal ammunition.

Follow me

Nearly dizzy from the noise on the range, we bid farewell to CSM Mitchell and headed for the National Infantry Museum. As if we didn't already feel honored enough, folks at the NIM held the building open after hours just so we could have a personal tour of the facility.

In keeping with previous events that day, our experience at the NIM was simply wonderful. The entire museum is a great testament to the Infantry. I strongly recommend you visit.

At the conclusion of our visit to the NIM, we returned to the Marshall House and grabbed some much-needed rest.

We finished our whirlwind visit to Ft. Benning by taking a quick jaunt in to Columbus and eating at The Black Cow. It was the perfect end to the perfect day.

I can't thank people enough for making our visit possible, and for making it such a memorable day.

Another dream come true

ALS MND News Digest

Researchers find additional benefits of cord blood cells in mice modeling ALS Medical Xpress ... delaying disease progression and increasing lifespan for mice modeling amyotrophic lateral sclerosis, or ALS, also referred to as Lou Gehrig's disease, report University of South Florida researchers and colleagues from Saneron CCEL Therapeutics, ... See all stories on this topic »

Dr. Olney

ALS MND News Digest

Head-trauma Lawsuits Against NFL Swell Cleveland News - Fox 8 Former Philadelphia Eagles fullback Kevin Turner suffers from amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease. He says his doctors tell him that there is no cure and he will die in two to 10 years. See all stories on this topic » Cleveland News - Fox 8

Former New Orleans Saints player Steve Gleason and retired NO fireman having ... NOLA.com Jourdan, like Gleason, the former Saints special teams standout, is afflicted with Amyotrophic Lateral Sclerosis, or ALS, a rare terminal disease that damages the nerves that control voluntary muscle movement. A couple of weeks ago, he received a call ... See all stories on this topic » NOLA.com

Marty Murray - Redefining Scum

My blog seems to have caught the attention of someone going by the name of Marty Murray. Murray, who is careful to use language that allows him to evade the need for such minor things as medical qualifications, basically claims that his coaching can cure you of ALS.

In a comment he tried to post on my  blog, Murray sought to lessen the value of people that actually hold medical qualifications because they don't pay much attention to his work.

Murray's site - http://creatingparadise.net - says that the correct train of thought can cure diseases like ALS, MS, Cancer, Allergies, and...hair loss. I'm sure he's working on an article that will claim positive thoughts can win the lottery, bring world peace, and change the oil on your car.

I could write for some time about the type of person that would surreptitiously gain contact information for people suffering from a fatal disease and seek to cast doubt on medical knowledge while touting his own "coaching," but perhaps direct quotes from people he's pestered in the past will serve to illustrate this point:

Yo, Marty, this is how it starts.
You call us.
Atty. Gen. Cuomo gets a call.
Got it?
You make 20 calls a day. One of them bites your scamartist a**.

Call my family again with your bu***hit and I will hunt you down and put a bullet in your head.

It's not enough that the love of my life is dying from this inhumane disease; but now I have to put up with phone calls from this guy? He called me at work, after tracing me through an article from the MDA, never once asked about my husband or showed any sign of compassion for what we must be dealing with. He talked non-stop and was very evasive about what he actually does.

Your not worth killing....you need to have your freedom taken away and then you may get a small glimpse of what these patients deal with and even that is not good enouugh for you. You will never ever get a dime from my house and if you call again I will consider it harrasement and then I will get my attorney's involved. DO NOT SOLICIT ME. I will have your a** if you do. You are despicable. 

If the words of people he has personally contacted aren't enough, perhaps the conclusion of a report in to Murray - http://www.alsuntangled.com/pdf/martymurray.pdf - will suffice:

MM ’ s [Murray's] statement that ALS development  “ is never really about genes ”  demonstrates that he has a shocking lack of awareness of more than a decade of ALS scientific literature. 

Reticence to call an intervention a ‘ treatment ’  is a strategy sometimes used to avoid laws that restrict the practice of medicine without a license. In our opinion, degrees in political science, economics and fi nance are not qualifi cations to provide medical advice, medical teaching or medical treatment. In the future, we hope that MM will clarify his lack of medical training, and the fact that he is offering  ‘ teaching or coaching.
We could confirm no definite motor improvements and Case 2 ’ s neurologist documented worsened motor function over the past year. Thus, terms like  ‘ solved ’  and  ‘ cured ’  should not be used by MM in describing his offering to patients.

Most importantly:

Finally, MM ’ s practice of cold-calling patients with ALS and their families is morally and ethically questionable, and is clearly disturbing to many. Patients and families who receive harassing phone calls should be aware that they can take action against the caller.

Privacy Rights.org (Internet). The Privacy Rights Clearinghouse; 2010 (cited 2010 July 15). Available from http://www.privacyrights.org/fs/fs3-hrs2.htm

Lastly, Murray - since I now know you visit my blog - do not contact me, my family or my employer. I would view any contact harassment, and will respond accordingly. Also, given the press I'll be receiving in the coming weeks, thank you for becoming the poster-child for the type of despicable person that harasses the terminally ill: I look forward to discussing people of your ilk in my upcoming print and TV interviews.

ALS/MND News Digest

Remembering Tony Judt New York Times Mr. Judt famously wrote the autobiographical fragments collected in "The Memory Chalet" after he was stricken with amyotrophic lateral sclerosis and had become effectively quadriplegic. In the Times Book Review, Geoff Dyer said the book was most deeply ... See all stories on this topic »

Students walk for muscular dystrophy The Baylor Lariat Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a form of muscular dystrophy. Muscular dystrophy diseases can affect a person of any age, Wheeler said. John Morris, assistant athletic director for broadcasting at Baylor, ... See all stories on this topic »

Martin

Get well soon. Love T

CLT

After another close call with flights and standby tickets, Amanda and I are waiting to board our flight to Atlanta. We had a wonderful moment when my Mum, who was flying back to Charlotte after a business trip, arrived at Charlotte at the same time we did. We enjoyed a quick chat - and I got a great cup of decaf from Starbucks - before Mum headed home.

On to ATL

Onward

That's the checkup at Hopkins completed. On to 24450, then CLT, and ATL...