Monthly Archives: September 2014

BRAIN: Launching America’s Next Moonshot

A very ambitious planned undertaking, Dr. Collins. Why don’t you include examining the brains of M.E. (myalgic encephalomyelitis) sufferers as well? Their brain inflammation is a great part of their traumatic suffering.

NIH Director's Blog

A stylized rocket headed toward a moon made of a human brain Moonshot to the BRAIN

Some have called it America’s next moonshot. Indeed, like the historic effort that culminated with the first moon landing in 1969, the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative is a bold, ambitious endeavor that will require the energy of thousands of our nation’s most creative minds working together over the long haul.

Our goal? To produce the first dynamic view of the human brain in action, revealing how its roughly 86 billion neurons and its trillions of connections interact in real time. This new view will revolutionize our understanding of how we think, feel, learn, remember, and move, transforming efforts to help the more than 1 billion people worldwide who suffer from autism, depression, schizophrenia, epilepsy, traumatic brain injury, Parkinson’s disease, Alzheimer’s disease, and other devastating brain disorders.

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Living with M.E.

A must read. This is a reblog of a sort of “reblog.” You’ll understand when you read this “beautiful piece of writing.” It is a description of what living with M.E. is really like by this courageous, creative woman.

Mast Cells & Collagen Behaving Badly

A few months ago one of my friends shared a link on Facebook to a post written by a friend of hers who’s had severe M.E. for 14 years now.  It’s a beautiful piece of writing and explains what living with M.E. is like far better than I ever could.  I have the permission of the author to reproduce it here.

This description of M.E. screams at the injustice of calling this disease “Chronic Fatigue Syndrome”.  Not once in this piece does Sarah mention feeling tired.  What we have isn’t “fatigue”.  It’s a complete collapse of every bodily system until just mearly breathing feels beyond us.

This piece also demonstrates why the diagnostic criteria for M.E. needs to be tightened, so that people with M.E. don’t get lumped together with those suffering from “chronic fatigue”.   I have chronic fatigue as part of my Ehlers-Danlos – it’s nothing like how I…

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National Insitututes of Health Awards Funds to Two Colleges for Undiagnosed Diseases Network

NIH has awarded the Medical College of Wisconsin and Baylor College of Medicine with more than $2.5 million over four years, depending on availability of funds.  These two centers are to be used as the DNA Sequencing Core sites for the NIH’s Undiagnosed Diseases Network.

This announcement has been published today by the GenomeWeb Daily News.

Since M.E. (Myalgic Encephalomyelitis) is considered an undiagnosed disease by our government (HHS; NIH, etc.), why can’t M.E. be included in the study of genome sequencing?

There are so many goings-on behind the scenes that the NIH doesn’t want the general public to find out about.  The whole scenario is scary.  It is easy to feel overwhelmed, helpless and, yes, bushwacked.

I don’t know anything about genomics – I’m not a scientist.  But, according to what I can decipher on Wikipedia, it is the study of genes, and DNA.  Now, this would be great if scientists could come up with a biomarker for this “undiagnosed disease,” wouldn’t it?  This has been the scuttlebutt going around amongst M.E. patients for a long time, and has been included in discussions amongst researchers who are chomping at the bit for funds to do just that.

Just sayin’

 

 

 

Short Message; Long Impact

A message for today.

 

be kind

Wishing you all a lovely Sunday.  😀

Feel Good About Yourself!

 

You have an impact on people you didn’t know you had.

You are special!

You are special!

You Know Those People That Really Matter to You? Hold on to Them Real Tight.

Hold tight to what matters most.

Kindness Blog

Amy Granberg wrote:

“I took this photo of a father being reunited with his son after his son got lost in Central Park. “

father being reunited with his son after his son got lost


share this powerful image using the buttons below


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iOS 8 Guide: 10 Cool Tips and Tricks

Great tips for iOS 8.

TIME

Say “Hey Siri” for No-Touch Assistance

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If your phone is plugged in, you can get Siri to do your bidding just by saying, “Hey Siri.”

You’ll need to enable the feature first by going to Settings > General > Siri and then toggling the Allow “Hey Siri” switch.

Again, your phone has to be plugged in for this to work, but it could be useful when paired with a car charger or while you’re at your desk.

Find Battery-Sucking Apps

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Battery being run down too fast? It’s most likely an app or two that are sapping an inordinate amount of juice. You can check which ones are causing the most trouble by going to Settings > General > Usage > Battery Usage.

You’ll see a list of the apps that have used the most battery over the past 24 hours, with the option to check which…

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AMAZING Nurse Agrees to Raise the Son of a Terminally ill Cancer Patient She is Caring for

One of the most moving, sad and at the same time, uplifting stories I’ve ever heard. This video tells it all.

Kindness Blog

Tricia Somers enjoys watching her 8-year-old son play with Legos. She knows moments like this could soon be gone, not because her son is growing up, but because she is dying.

AMAZING Nurse Agrees to Raise the Son of a Terminally ill Cancer Patient She is Caring for

Somers, 45, was diagnosed with liver cancer last year. In March, she found out it was terminal. The single mother’s biggest concern was her son and who would take care of him when she died.

“He is the only thing I got and I have to leave him,” she said. “It is really hard and I feel bad that I am doing that to him and he says, ‘Mommy it is not your fault.’ “

Somers’ options were limited. Her parents passed away from cancer years ago, her brother told her he did not see a child in his life, and her ex-husband has not been a constant in Wesley’s life.

She was devastated until a nurse, with the…

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Weeds

A lovely poem about weeds in the garden.

Where Art and Nature Come Together

Considered the world’s most prestigious competition of horticultural art, Mosaiculture was displayed at Montreal Botanical Garden in Quebec, Canada, last year. More than three million flowers were raised in greenhouses throughout Quebec, and then shipped to the gardens in May, where designers wrapped them in steel meshes to create living works of art. The sculptures were created using steel or aluminum forms that were wrapped in metal mesh, filled with earth and planted with flowers, ivies and grasses whose foliage provided texture and color. Interior watering systems and growing medium were added so that the flowers could last all through the summer till the end of the exhibition in the end of September.

I invite you to enjoy these amazing images:

Lemurs.  This line of lemurs was featured at the entrance.

Lemurs. This line of lemurs was featured at the entrance.

Mother Earth

Mother Earth

Water is a gift of Mother Earth, enjoyed by wild horses and eagles.

Water is a gift of Mother Earth, enjoyed by wild horses and eagle.

Lady and Cranes - taken from a Chinese myth.

Lady and Cranes – taken from a Chinese myth.

Lady and Cranes - from a different perspective.

Lady and Cranes – from a different perspective.

Man Who Planted Trees

Man Who Planted Trees

Crouching Frog

Crouching Frog on lily pad.

Cobras.  Some of the creations were very high.

Cobras. Some of the creations were very tall.

Clown Fish

Clown Fish swimming among sea grass.

Barn Owl.  One of my favorites of the display.

Barn Owl. One of my favorites of the display.

 Bird   Tree.  This huge sculpture is 40 feet high and they built  special high bridge at this end so people could take photographs more easily.  Every branch becomes a different bird. The wing span of the condor must be at least 8 feet.

Bird Tree. This huge sculpture was 40 feet high and a special high bridge was built at this
end so people could take photographs more easily. Each branch became a different bird.
The wing span of the condor was at least 8 feet.

Big Flowers.  Notice the large bee at the right.

Big Flowers. Notice the large bee at the right.

 Butterflies.  They are about eight feet high and stood outside the Insectarium, a building housing exhibits of insects.

Butterflies. They were about eight feet high and stood outside the Insectarium,
a building housing exhibits of insects.