Posted 6 months ago

Another Great TED Talk …

Siddharthan Chandran: Can the damaged brain repair itself? 

After a traumatic brain injury, it sometimes happens that the brain can repair itself, building new brain cells to replace damaged ones. But the repair doesn’t happen quickly enough to allow recovery from degenerative conditions like motor neuron disease (also known as Lou Gehrig’s disease or ALS). Siddharthan Chandran walks through some new techniques using special stem cells that could allow the damaged brain to rebuild faster.

Siddharthan Chandran explores how to heal damage from degenerative disorders such as MS and motor neuron disease (ALS).

Posted 7 months ago

Superbowl and ALS …

Watching the ‪#‎SuperBowl‬ later today? Keep an eye out for this minute-long Microsoft commercial that will feature former New Orleans Saint Steve Gleason, who is living with ‪#‎ALS‬. …

Posted 8 months ago

Another “First” in Life Experiences …

I’ve slept on the floor, on the ground, in a tent, in a sleeping bag, on a couch and in a bean bag chair … but last night was my first time sleeping the whole night in a recliner connected to a BIPAP machine (BIPAP tutorial below).  Now I know why so many folks with ALS sleep in recliners and not beds.

It was the best, uninterrupted, nights sleep I’ve had in a few weeks - was not worrying about my compromised breathing — and woke up this morning without a headache (due to low blood oxygen) for the first time in a while … What a Deal!

Posted 8 months ago

Maybe we can make a difference in the ALS arena …

ALS - Veterans Support Foundation Inc.

We must never forget all that veterans have given, every day protecting the privileges, comforts and freedoms that WE enjoy.  Service men and women know they were fighting honorably for something larger than themselves — the same holds true for this fight versus ALS …

Posted 9 months ago

3 Years and Still Transitioning :) …

Well it has now been 3 full years since the neurologist at GW University told me I had 2-4 years to liive.  

I am thankful to be a slow progressor and for the many wonderful things I have had the good fortune to experience in these past 3 years.

Wanted to share the history of my ALS journey so far …




Listened to Carrie Underwood sing this the other day — from The Sound of Music — I think this what I do:

When the dog bites, when the bee stings
When I’m feeling sad
I simply remember my favorite things
And then I don’t feel so bad

Posted 9 months ago

More progress in the possible treatment of ALS …

But how long will it take for the US to “adopt” this area of possibilities and begin human testing?

I’d raise my hand and volunteer … the potential side effects couldn’t be much worse than what’s already happening to me.


A major step towards the cure of sporadic ALS

Experimental gene therapy for a sporadic ALS mouse model

Amyotrophic lateral sclerosis (ALS) develops mainly in the middle-aged and elderly and is characterized by progressive muscular weakness and muscular atrophy. There is no known cure for this incurable neurological disease, which leads to death due to paralysis of the respiratory muscles within a few years of onset. The research group of Project Professor Shin Kwak (Visiting Researcher, Clinical Biotechnology Laboratory, Center for Disease Biology and Integrative Medicine, Graduate School of Medicine, the University of Tokyo; Project Professor, Clinical Research Center for Medicine, International University of Health and Welfare) had discovered in earlier research that the enzyme ADAR2 was involved in neuron cell death in non-familial ALS, which accounts for the great majority of cases of the disease.

© teamkwak, A single intravenous injection of AAV9 vector successfully delivered the human ADAR2 (RNA editing enzyme) gene to motor neurons of AR2 mice, in which the ADAR2 gene was ablated selectively in the motor neurons, therefore comprising a mechanistic mouse model of sporadic ALS. The resulting expression of ADAR2 effectively rescued progressive motor dysfunction and death of motor neurons in the AR2 mice.

In this study, Project Professor Kwak and Project Researcher Takenari Yamashita (Clinical Biotechnology Laboratory, Center for Disease Biology and Integrative Medicine, Graduate School of Medicine, the University of Tokyo), in collaboration with Special Professor Shinichi Muramatsu’s research group (Jichi Medical University), developed an adeno-associated virus serotype 9 (AAV9) vector that would enable gene delivery only to the neurons of mouse brain and spinal cord. When this vector was administered by intravenous injection into the sporadic ALS model mice (AR2), the researchers succeeded for the first time in stopping the degeneration and loss of motor neurons and the progression of symptoms of the disease.

Further, even when administered after the emergence of symptoms, expression of the ADAR2 gene in motor neurons stopped the process leading to cell death and symptoms due to cell death were prevented without any apparent side-effects. It is conventionally thought that it is difficult to introduce genetic material into the brain and spinal cord by intravenous injection, but one intravenous injection alone was sufficient to bring about long-lasting expression of an effective quantity of the ADAR2 gene through the use of the AAV9 vector to trigger gene expression only in neurons.

While this result was achieved with a model mouse, it is thought that a similar molecular mechanism underlies sporadic ALS in human patients, and as human ADAR2 gene had a therapeutic effect in the model mouse, it is anticipated that a similar form of gene therapy will be effective in treating human ALS as well. Further, the AAV9 vector is known to be safe, and after confirming the safety of the improved AAV9 vector and determining optimal dosage, it is hoped that this research will open a new route to the treatment of ALS. Currently gene therapy has a strong image as a replacement therapy for rare genetic disorders, but this research is unique in that it shows that gene therapy is possible even in sporadic cases if the molecular pathology of the disease is understood.

This research was published in EMBO Molecular Medicine (24 September 2013 online edition). The present study was conducted with the support of the Japan Science and Technology Agency Strategic Basic Research Programs (CREST) and the Ministry of Health, Labour and Welfare Illness-related Disabilities Measures Research Program.


Takenari Yamashita, Hui Lin Chai, Sayaka Teramoto, Shoji Tsuji, Kuniko Shimazaki, Shin-ichi Muramatsu and Shin Kwak,
“Rescue of amyotrophic lateral sclerosis phenotype in a mouse model by intravenous AAV9-ADAR2delivery to motor neurons,”
EMBO Molecular Medicine Online Edition: 2013/9/24 (Japan time), doi: 10.1002/emmm.201302935.

Posted 10 months ago

A MILE IN ALS SHOES … A dose of reality

Saw this today and wanted to share it with others …


People ask me often what it’s like to live with ALS.   It’s a brave question because the answers are not very pleasant.   But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting.  As I watch my strong husband struggle with things that used to be easy and automatic, I sometimes wish that everyone could see life from his perspective.

Empathy isn’t the same as sympathy.  Sympathy means we feel sorry for people, empathy means we work to understand and identify with their pain.  Empathy isn’t always easy to squeeze into our busy and difficult lives, but it’s worth it.  It makes us more human in all the ways that matter and – in the search for a cure for ALS – empathy is our most effective motivator.

If you would like to experience just a tiny corner of an ALS life, I have a list of Empathetic Experiences for you.  These are things you can do to walk for just a mile in ALS shoes.  If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.

  1.  Pick up a 10-pound weight.  Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
  2. Sit in a chair for just 15 minutes moving nothing but your eyes.  Nothing.  No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work.  Only your eyes.   As you sit, imagine: this is your life.  Your only life.
  3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking.  Note the way people react to you.
  4. Strap 25 pounds to your forearm.  Now, adjust your rearview mirror.
  5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth.  Write down some of the feelings you have being cared for in this way.
  6. Before you eat your next meal, take a good, long look at the food.  Inhale deeply and appreciate the aroma.  Now, imagine never being able to taste that – or any other food – for the rest of your life.
  7.  Put two large marshmallows in your mouth and have a conversation with your friends.   How many times must you repeat yourself?  How does this make you feel?
  8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
  9. Strap weights to your ankles and climb a flight of stairs, taking two at a time.  That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
  10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.

And to my friends living with ALS:  please give us more ideas and help us move into your world for a bit.  We want to help make your lives rich and full and I’m not sure we can do that without at least a basic understanding of what you are facing. I think I speak for many when I say:  you are superheroes and we are in awe.

With unending hope for a million-mile cure,


Posted 11 months ago

10/12 - 10/13/2013 … A Weekend to Remember Always (A Birthday and a Wedding)

The weekend in Charlottesville, VA (yes … home of the Wahoos) started on 10/12 with Harper Kate’s Birthday - she’s 2 years old already!





To top off the day of 10/12 — a great wedding rehearsal dinner hosted by the Raedy Family …




The CRUSTIES were amazing …


Then the big day 10/13 — the marriage of our daughter Sarah Elizabeth Murphy to Brendan Daniel Raedy …


If someone had told me in December 2010 that I’d be walking my “baby” daughter Sarah down the aisle and be able to dance with her at her wedding this past weekend (or even be around for her wedding) — I wouldn’t have believed it.

Sarah and I just before the ceremony …


Our son Tom escorting the Mother of the Bride and Harper Kate …


The Bride and Dad walk down the aisle at the Old Metropolitan Hall -


"I pronounce you husband and wife — you may kiss the bride" …


Back up the aisle - but now as husband and wife …


From left to right the bridal party:  Tom (our son), Mike, Jeff, Jeff, Matt, Brendan, Sarah, Holly, Sora, Jessica, Kristin (our daughter and Maid of Honor) and Hannah.


My speech and toast …


First dance as husband and wife …


Dad and Bride danced to “Somewhere over the Rainbow” - Israel “IZ” Kamakawiwoʻole -


Pastaccio wedding cake - delicious!


The finale at the end of the evening …



At the end of the evening Keri looks tremendous and I look like I’m about to pass out from exhaustion …


A Thank You FB Post from Sarah …


And they are already in the Dominican Republic on their honeymoon on Tuesday afternoon 10/15 … What a Deal …


***** Big photo credits to Carly Romeo (Two Spoons Photography) for her pictures that I used for ths blog post *****

Posted 11 months ago

Can’t Remember the Last Time I Received a Participation “CERTIFICATE” …


FDA Patient Representatve Class of 2013 

(I’m the guy in the back row middle)


Posted 1 year ago

Remembering my “little brother” Patrick on 9/11 …

Our loving memories of Patrick come to the fore once again on this bittersweet day … 

He’s been sending all of us his love every day for 12 years and I hope he knows we’ve been doing the same for him and miss him very much.

Posted 1 year ago

Two very recent ALS “Journey” stories …

One is about living with ALS and one is about leaving with ALS - I found them to be inspirational, encouraging and also a bit frightening for someone like myself with ALS that has not progressed quite this far yet.  These are really strong people who did their best or are doing their best when faced with the insurmountable/overwhelming challenges of ALS …

'My furry foil': How a goofy dog inspired author with ALS to write again

ALS, Lou Gehrig's Disease, Suz Porter, Wife of ALS, Death and ALS

Posted 1 year ago
Posted 1 year ago

CNN ALS Series … this week

Very good three part series … July 23rd, 25th and 26th at 1pm on CNN - watch or record for viewing later.

July 23rd, 2013
03:38 PM ET

CNN’s Suzanne Malveaux on her Mother’s Battle with ALS

CNN’s Suzanne Malveaux shares her family’s personal journey with ALS. Suzanne’s mother Myrna Malveaux was diagnosed with the disease a year and a half ago.

Malveaux’s ALS Series continues this week:

Thursday, July 25th for Malveaux visits with former New Orleans Saint Steve Gleason and his family and witnessed the “tricked” out technology of Gleason’s $25 million dollar high-tech facility built for ALS patients.

Friday, July 26th Malveaux followed Augie Nieto. Nieto is the founder of Life Fitness Gym and was diagnosed with ALS eight years ago. Nieto launched his foundation “Augie’s Quest” raising $37 million dollars to find a cure for the disease. This will be the conclusion of the series.

June 25th, 2013
09:24 AM ET

CNN’s Suzanne Malveaux Sheds Light on ALS

The series will air on CNN Newsroom July 23rd, 25th and 26th at 1pm.

CNN anchor Suzanne Malveaux will focus on ALS with a one-time series reporting on three unique faces of ALS and how their families are coping. With the help of Dr. Sanjay Gupta this series will tap into the medical resources as well as the research of the disease.

ALS, (Lou Gehrig’s Disease), is a fatal fast moving disease of the nerve cells in the brain and spinal cord that affects more than 30,000 people at any given time. A person who has ALS loses their ability to control their voluntary muscles and eventually cannot swallow, speak, breathe, or move. They become completely paralyzed and are dependent on machines to live-relying on a feeding tube, trache, breathing machine, motorized wheelchair, and communications equipment. ALS patients usually live 2 to 5 years after their diagnosis, although there are rare exceptions. There is currently no cure for the disease.

ALS is no stranger to Malveaux, on Tuesday’s edition of the series Living with ALS will focus on how the disease has affected her mother, Myrna Malveaux. She pulls back the curtains of her family’s journey to care for her mother and overcome her near death experience. Living with ALS documents Mrs. Malveaux’s journey from a Mardi Gras party host on her birthday to an ALS survivor. Despite being unable to walk, eat or breathe on her own, she has taken her message to Capitol Hill.

The second part of the series, From the grid iron, to a wheelchair, takes a look at former NFL superstar, Steve Gleason’s journey as he works to improve the quality of life for ALS patients. The former New Orleans Saints player, who was diagnosed at 33, was thrust into the spotlight last week when three Atlanta radio DJs were fired for mocking him. Gleason forgave the DJs and is using this incident as a teachable moment at the New Orleans ALS Summit to push to improve technological care for patients with this disease. Malveaux visited Gleason and his family in their New Orleans home, witnessed the ‘tricked’ out technology of Gleason’s $25 million dollar high-tech facility built for ALS patients, and learns that Gleason uses his eyes to tweet to his 27,000 followers.

Augie’s Quest, the cure for ALS, will conclude the series. It follows Augie Nieto, the founder of Life Fitness equipment manufacturer who after being diagnosed with ALS eight years ago attempted suicide. After surviving, Augie was dedicated to finding a cure and launched his foundation, “Augie’s Quest” raising $37 million dollars. Nieto communicates by tapping his toes and has enlisted the fitness community with the support of ZUMBA to fundraise for ALS. We talked to Dr. Sanjay Gupta and researchers at Johns Hopkins about the hopes of stem cell research and finding a cure for the deadly disease.

For more information on how to help individuals suffering with ALS, please go toIMPACT YOUR WORLD.

Posted 1 year ago

I have a feeling …

that I was one of the 58 ALS patients involved in the “error”.  But I’ve also been told that I will never actually know …

Cytokinetics: Programming Error Increases Tirasemtiv Trial Costs by $5 Million

Wall Street Journal

Cytokinetics Inc. (CYTK) said a programming error tied to a trial meant to evaluate a treatment for amyotrophic lateral sclerosis will increase its direct clinical trial costs by about $5 million in 2013 and 2014, while also saying it has amended the

Posted 1 year ago

CNN Special on ALS - Part 1 of 3 …

I’ll post all 3 parts as they are released and shown on CNN.

Just click this url link below.