To Repair a Brain... Mom on a quest!!!

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To Repair a Brain

How One Disabled Kid Sent His Mom on a Cell Hunt

June 30, 2009

By Isabelle T. , Santa Barbara Independent

Palmer Richmond may lack the gift of speech, but he’s got the art of making

people laugh down pat. And don’t imagine that his disability keeps him from

putting one over on his mother from time to time either. Take the morning she

went to prepare him for a session with a therapist and found him slumped and

lethargic in his chair. Thinking he was sick, when the therapist arrived, his

mom sent her away. Meanwhile, back in his room, Palmer was bright-eyed and

bushy-tailed once again.

Though he turned 13 last fall, Palmer hasn’t achieved the most basic

developmental milestones expected of children in the early years of life, things

like standing and walking and talking. No one knows exactly why. What is known

is that he began having seizures two-and-a-half days after birth. Then, a week

later in the Neonatal Intensive Care Unit (NICU) at Cottage, he contracted

necrotizing enterocolitis (NEC), a disease in which the intestinal tissue

basically dies. Palmer underwent emergency surgery to remove two thirds of his

intestines. With two conditions now, doctors began looking for a syndrome, but

never found one. At 10 weeks of age, he was released from Cottage with a

diagnosis of “we don’t know.â€

At home with Palmer, his mother, Fia Richmond, began to navigate an ocean of

questions. He was having myriad health issues but wasn’t reaching

developmental targets. She soon discovered a vast underground network of parents

of developmentally disabled children on the Internet; basically, a population of

worn-out moms like herself. She also began a regimen of reading; not your

typical night table fare, but medical journals, neurology textbooks—anything

and everything she could find on the developing brain. Most parents would likely

have focused on getting a definitive diagnosis, but Richmond channeled her

frustration into the hunt for a treatment. By 1998, the same year Wisconsin

researcher Thomson isolated human embryonic stem cells in his university

laboratory, Richmond embarked on a cell hunt of her own, doggedly pursuing a

treatment that would allow Palmer’s brain to repair itself, even if only

partially.

That’s how this former graphic designer with a master's degree in depth

psychology ended up in the neurosciences department of Harvard Medical School,

dialoging with brain researchers on the subject of regenerative medicine and the

pediatric brain. Richmond soon discovered that 99 percent of brain research

today is being done on the adult brain, on diseases like Parkinson’s and

Alzheimer’s. She kept wondering, “What about the kids?â€

There are at least 14 million children in this country with a brain disorder for

which there is no treatment or cure. According to a decade old Centers for

Disease Control and Prevention (CDC) report, that’s 17 percent of American

children between zero and 19. These disorders include things like cerebral

palsy, autism, epilepsy, Tay-Sachs, Sandhoff’s, plus millions of youngsters

who, like Palmer, have a diagnosis of “we don’t know.†Actually, a

diagnosis of cerebral palsy technically is an “I don’t know†disease, too,

as more than half the cases aren’t associated with a specific known cause or

risk factor. It still remains mainly a collection of symptoms, doctors say.

Not long after embarking on this quest to cure Palmer, Richmond and her husband

Phil started Children’s Neurobiological Solutions (CNS), a foundation

dedicated to advancing research in children’s brain disorders. They were

thinking not just of Palmer, but of the other thousands of kids and their

families, and how much even the very small, incremental improvements enhance

their quality of life.

“They don’t have the J. Foxes or the Reeves out there

pounding the pavement for them. … Just getting through the day with these kids

[is an accomplishment]. I mean, any moment I could call a friend and they could

be in the hospital with their kid.â€

“[This] parent population is so tired,†Richmond said. “They don’t have

the J. Foxes or the Reeves out there pounding the pavement

for them. … Just getting through the day with these kids [is an

accomplishment]. I mean, any moment I could call a friend and they could be in

the hospital with their kid.â€

Richmond started out by writing letters to other families and holding

fundraisers in different parts of the country. Today, the hard work of CNS goes

into organizing and hosting scientific workshops, gatherings in which scientists

from around the country come to address a particular question or aspect of

neurological impairment together; lysosomal storage disorders, for example, or

spinal cord problems. Experts agree there’s enormous crossover between adult

and pediatric brain disorders, so getting neuroscientists into the same room to

share ideas and knowledge and look at problems from a new perspective

accelerates the process exponentially.

Ken Kosik, MD, is codirector of USCB’s Neuroscience Research Institute and

currently is leading a $2 million multidisciplinary research project into the

neurofibrillary tangles that are characteristic of Alzheimer’s disease. He

also cochaired last year’s Young Neuroscientists’ Workshop for CNS.

According to Kosik, kids with a disease called Niemann-Pick have a protein that

collects in their brain that is identical to the neurofibrillary tangles of

Alzheimer’s. “So you can imagine how much you can learn by putting together

these different areas,†he said. “In Alzheimer’s, you have senile plaques

and neurofibrillary tangles. These kids [with Niemann-Pick] don’t have the

plaques, but they have those tangles.â€

Needless to say, stem cells are playing a big role in the majority of CNS’s

research. They are, in fact, the biological foundation of not just the brain but

all the other organs in the body. At the very least, they can explain how

diseases like Tay-Sachs or Sandoff’s evolve, or serve as a vehicle for

delivering certain missing enzymes or proteins.

And there are signs that the Richmonds’ work is paying off. Two

neuroscientists attending the 2004 CNS workshop are now on their way to clinical

trial on a project they came up with there. Another CNS project that originated

at that workshop is inching closer to clinical trial, too. And one of the

scientists at last year’s young scientists' workshop changed his entire

research path from adult stroke to pediatric stroke.

“So many drugs and different kinds of clinical trials are done in adults

before they’re done in

kids. We’re trying to say it needs to be trickle-up.â€

“Medicine has always been trickle-down, research wise,†said Richmond. “So

many drugs and different kinds of clinical trials are done in adults before

they’re done in kids. We’re trying to say it needs to be trickle-up.â€

The difficulty with children’s neurological disorders has always been that so

many of them are rare diseases. There are as few as 1,200 diagnosed cases of

Niemann-Pick worldwide, for example. That makes the job of funding research even

harder. Bringing all the pediatric neurological disorders under one umbrella by

researching their commonalities gets around that problem.

At Palmer’s house in the hills above Santa Barbara, weekdays are workdays. He

pretty much goes from one therapy session to another. But weekends are totally

therapy-free. No exercise bike, no bio-feedback, no stander. He gets to just

kick back and hang with his parents. He and his dad watch sports together on TV.

From the little time I spent with him, it’s clear Palmer is a people person.

He can’t communicate orally, but Richmond said he manages to make really

strong connections with people regardless. Take the time one of his caregivers

left because she needed to have extensive surgery. When it was all over, she

told Richmond that before the procedure, Palmer came to her in a dream. In it,

he’d said, “If I can do it, you can.â€

“He’s our little shaman,†Richmond said.

 

Love, Gabby. :0)

http://stemcellforautism.blogspot.com/

 

" I know of nobody who is purely Autistic or purely neurotypical. Even God had

some Autistic moments, which is why the planets all spin. " ~ Jerry Newport