DAVID GRANOVSKY

Thomas Gray lived six days, but his life has lasting impact

In ALL ARTICLES, HOPE AND INSPIRATION on March 31, 2015 at 9:47 am

Thomas Gray lived six days, but his life has lasting impact

Sarah Gray reacts to research information about the donated retinas from her son, Thomas, who died at six days old in 2010. Callum, 5, Thomas´ identical twin brother, plays during the visit to the Hospital of the University of Pennsylvania.

Sarah Gray reacts to research information about the donated retinas from her son, Thomas, who died at six days old in 2010. Callum, 5, Thomas’ identical twin brother, plays during the visit to the Hospital of the University of Pennsylvania. DAVID MAIALETTI / Staff Photographer
Sarah Gray reacts to research information about the donated retinas from her son, Thomas, who died at six days old in 2010. Callum, 5, Thomas´ identical twin brother, plays during the visit to the Hospital of the University of Pennsylvania.
Gallery: Thomas Gray lived six days, but his life has lasting impact

Michael Vitez, INQUIRER STAFF WRITER

When she found out early in her pregnancy that one of her identical twins would die at birth, Sarah Gray began a five-year journey that culminated last week in Philadelphia.

She had to carry the sick baby to term in order to protect his healthy twin. And she also looked into organ and tissue donation.

“Instead of thinking of our son as a victim,” she said, “I started thinking of him as a contributor to research, to science.”

On March 23, 2010, Thomas and Callum Gray were born at Fairfax Hospital in Virginia. Callum, perfect, was five pounds, 10 ounces. Thomas, four pounds, was born without part of his brain. His mother nursed him, diapered him, cradled him.

He died after six days – five years ago on Sunday. Within hours of Thomas’ death, his eyes and liver were recovered and sent – along with umbilical cord blood from him and his brother – to researchers.But that wasn’t the end of it for Sarah Gray.

She often wondered – what became of his eyes, his blood, his liver?

The Grays had received a thank-you letter from the Washington regional transplant organization, telling them their son’s corneas had been sent to the Schepens Eye Research Institute in Boston, and his liver and the cord blood to Duke University in North Carolina.

Two years later, on a business trip to Boston, Sarah Gray called the eye institute, which is affiliated with Harvard Medical School.

“I donated my son’s eyes to your lab,” she said on the phone. “Can I come by for a tour?”

The receptionist said she had never had such a request. “I’m not sure who to transfer you to,” she said, “but don’t hang up!”

The next day, Gray met James Zieske, the institute’s senior scientist, who told her “infant eyes are worth their weight in gold,” because, being so young, they have great regenerative properties. Thomas’ corneas were used in a study that could one day help cure corneal blindness.

Thirteen more studies had cited that study. Gray felt a new emotion: pride.

Before leaving, she bought a Harvard T-shirt for Callum, and decided she was going to go with the whole family to North Carolina, where Thomas’ liver and the cord blood had been sent.

Zieske also wrote her: “Your visit helped to remind me that all the eyes we receive are an incredibly generous gift from someone who loved and cared about the person who provided the eyes. I thank you for reminding me of this.”

A few months later in 2012, the Grays went to the Duke Center for Human Genetics in Durham, N.C., where even though the twins were identical, scientists found epigenetic differences in their cord blood, research that could one day help prevent Thomas’ fatal defect, anencephaly.

Sarah Gray bought Callum a Duke T-shirt.

The couple then drove down to the road to visit Cytonet, a biotech company that had used their baby’s liver in a trial to determine the best temperature to freeze liver tissue.

Already in the nonprofit public relations field, Sarah Gray became director of marketing for the American Association of Tissue Banks.

Her mantra has become donate, donate, donate, and not just for transplant, but also for research. Even if nobody asks you – doctors are often uncomfortable when a child is dying – bring it up yourself, she says.

At a conference last summer, by coincidence, Gray learned that the Old Dominion Eye Bank in North Chesterfield, Va., had shipped Thomas’ retinas to Philadelphia.

She couldn’t believe she’d never known this. She immediately wrote to the researcher at the University of Pennsylvania who used the donation in her efforts to cure retinoblastoma, the most common form of eye cancer in children.

Two days later, Gray got a reply from Arupa Ganguly, who runs the lab and is a genetics professor at the Hospital of the University of Pennsylvania.

“It is almost impossible to obtain normal retina from a child,” Ganguly wrote. “The sample from Thomas is extremely precious for us.”

Ganguly sent Callum a Penn T-shirt.

They arranged to meet last Monday.

First, Sarah, Ross, and Callum Gray went to the National Disease Research Interchange in Center City, which Sarah Gray calls “the Match.com of science.” The interchange connects hospitals that supply organs and tissue with researchers who request it.

“This seems to have brought you a lot of peace and joy,” Bill Leinweber, the interchange’s president and CEO, told Sarah. “You’ve been such a strong advocate for research and such an eloquent spokesperson for the value of research.”

After a visit there, the Gray family went to Penn to meet Ganguly and tour her lab.

Sarah Gray saw the marbled composition book in which the receipt of retinas was logged on March 30, 2010, the 360th specimen to be received. They became “RES 360,” short for Research 360.

“Is this the log book?” she asked. “Oh, my gosh.”

Gray ran her index finger over the cursive of Jennifer Yutz, the lab manager who recorded the entry.

“Ross, look at this! Med 360!”

Her husband took a look. Callum, then 4, hugged an inflatable Godzilla as tall as he is, a gift from Ganguly, bouncing it on the lab floor.

“Wow,” Sarah Gray continued. “Can I Xerox this?”

“We have a copy for you,” Ganguly said.

Penn also gave the Grays a copy of the Fed Ex packing slip confirming arrival, which Sarah Gray said she would “treasure like a war medal.”

Thomas’ retina tissue is so rare, so precious, Ganguly and her team are still saving some of it for future research. Ganguly’s staff led Sarah Gray into the hallway, where a refrigerator, innocuous and ordinary, stood across from student lockers. Yutz unlocked it.

Inside were hundreds of 1.5 milliliter tubes – smaller than cigarette filters.

Yutz pointed to two.

“There it is,” Yutz said.

“Oh my gosh!” Gray said. She couldn’t touch them. The tubes were frozen at minus-80 degrees centigrade (minus-112 Fahrenheit).

“It’s the RNA isolated from the retina tissue,” Yutz said.

Call it what you will, that was a piece of Thomas Gray, her son.

Ross Gray has long supported his wife’s journey.

“It helped her get over the loss,” he said. “It was part of the healing process, seeing that there’s still research going on five years after. His life was worthwhile. He’s brought a lot of good to the world.”

“The way I see it,” Sarah Gray said, “our son got into Harvard, Duke, and Penn. He has a job. He is relevant to the world. I only hope my life can be as relevant.”

Read more at http://www.philly.com/philly/health/20150329_Thomas_Gray_lived_six_days__but_his_life_has_lasting_impact.html#ASIBfjvkMHBMos7Y.99

Anecdotal – The Dirty Word in Gordie Howe’s Stem Cell Treatment

In ALL ARTICLES on February 10, 2015 at 7:35 pm

What does it tell you when expert after expert tries to discredit the results of Gordie Howe’s stem cell treatment while his son Dr. Murray Howe, chairman of Toledo Hospital’s department of radiology, credits the stem cells for his recovery?

Dr. Murray Howe is the chairman of Toledo Hospital's department of radiology.

Dr. Murray Howe is the chairman of Toledo Hospital’s department of radiology.

What does it tell you when expert after expert claim his recovery and improvements are insignificant…while simultaneously attributing his recovery and improvements to everything except the stem cells he received?

What does it tell you when expert after expert discredits the anecdotal evidence of Gordie Howe’s recovery as “merely anecdotal” while it is actually one mere drop in an ocean of tens of thousands per year who have improved from cancer with cellular therapies over the last 59 years and tens of thousands who have improved over the past 12-14 years from non-cancer conditions?

And what is the value of this huge array of empirical and anecdotal evidence?

Gordie Howe Recovers From Stroke with Stem Cells

Gordie Howe Recovers From Stroke with Stem Cells

There are many types of evidence, not just trials or anecdotal.  Too often we reduce the evidential options to either clinical trials or anecdote.  Wrong.  That’s 5 blind men describing an elephant all over again.  We must take into account ALL of the different types of evidence and only THEN we can make a judgment based on the cumulative evidential data.

Anecdotal Evidence – Peyton Manning, Kobe Bryant, Rafael Nadar, Bartolo Colon…athletes from major sports organizations all over the world are embracing and anecdotally illustrating the safety and efficacy of cellular therapies

Statistical Evidence – 50,000 patients per year… are statistically illustrating the safety and efficacy of cellular therapies

Testimonial Evidence – Youtube is chock full of testimonies of athletes and patients who are benefiting from cellular therapies and via testimonial, illustrating the safety and efficacy of cellular therapies

Analogical Evidence – 59 years and thousands of trials and studies are analogously illustrating the safety and efficacy of cellular therapies

Clinical Trial evidence – Even though it may be the wrong process to evaluate cellular therapies, the vast majority of over 2,400 clinical trials are scientifically and empirically illustrating the safety and efficacy of cellular therapies

Miracle results? No.  This is par for the course results from real expectations based on the multitude of evidence types collected over the past six decades for cellular therapies.  The combined patchwork of all of the data from all of these evidences paints a very compelling conclusion.

Are cellular therapies safe and effective?  All of the evidences seem to say so.  Not just the anecdotal evidence;
anecdotal,
statistical,
testimonial,
analogical
and clinical trial evidences.

by David Granovsky, Stem Cell Writer and Author

Read one of the many myopically evidential articles here: http://www.theglobeandmail.com/globe-debate/the-stem-cell-miracle-is-anecdotal/article22880977/

SHOULD STEM CELLS BE USED ONLY AS A LAST RESORT?

In ALL ARTICLES on January 12, 2015 at 1:49 pm

https://i2.wp.com/upload.wikimedia.org/wikipedia/commons/e/e8/Last_Resort_Logo_Noir.png

Should stem cells be used only as a last resort? 

Two reasons why the answer is NO!

1.  Last week I saw someone with no education on stem cells stating that stem cells should be used only as a last resort.
The presentation of stem cell therapies as a last resort is tragic. Unfortunately, most people do come to me asking for information as a last resort.  They have been advised by their friends, family, medical professionals and media that they should try everything else and not try stem cells.  When all else fails and they finally approach me, “I’ve tried everything,” is a common explanation. Again, tragic. In many cases, the sooner stem cells are used, the faster patients can improve their quality of life, relieve their suffering and mediate their symptoms.
The CEO of a well known stem cell company made this analogy: “Most people renovate their homes just before selling them.  What a missed opportunity!  If they renovated them earlier they would derive years of pleasure from the renovation instead of fixing things up for the next owner.”  But what if you used stem cell therapies to improve your health and fix your body BEFORE you exhausted all other resources, money, energy, your immune system and your health?   What a concept.
2.  A new study is investigating the question: Is stem cell therapy less effective in older patients with chronic diseases?
Let’s over-simplify…
When was the last time a piece of equipment in your car failed and another one didn’t fail soon after.  This is because they are dependent upon each other for optimum efficiency.  The older the patient and the more advanced their disease, the odds are, the more there are other organs and systems being taxed beyond their capabilities.  And many people believe one pill will fix their disease but it’s far from true.  We must change the one pill for one one disease, one size fits all, magic cure belief which is rampant in the USA.  There is no evidence to support it.
Look at it another way.  Consider your body a battleground and the disease is the enemy.  The surest way to fight the enemy is to send wave after wave of soldiers (stem cells) into battle.  But many of the same issues in battle restrict maximizing the success of your therapy.  If you cut off the supply routes to the soldiers carrying food and ammunition (a weakened or restricted circulatory system), your soldiers’ ability to move to the battle will be ineffective.  If you wipe out their communications (cytokines/messenger cells), your soldiers won’t know where to go or what is needed to fight.
Time is always against us.  The longer we wait, the more our resources will be depleted and our other organs and systems will be taxed, both to support the failing areas and due to the natural deterioration associated with aging.  “Aging and chronic diseases including CVD and diabetes substantially affect stem/progenitor cells of adult organism. Such conditions could restrict the effectiveness of autologous cell therapy in aged patients with CAD, lower limb ischemia, T2DM and other chronic pathologies, although these patients are some of the most obvious candidates for cell therapy.”

Autologous Stem Cell Therapy: How Aging and Chronic Diseases Affect Stem and Progenitor Cells – http://online.liebertpub.com/doi/full/10.1089/biores.2014.0042

It is my hope that people do real research or talk to someone who has so they can make an educated decision about reclaiming their health. There is a great deal of misinformation out there and many people are trying to sabotage the real info and data getting to those whom need it most. Let’s work together to get rid of misinformation and not perpetuate the confusion which may lead to unnecessary suffering.  DON’T WAIT.
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