Quote from: PrivateerThats why only the Chinese do it they use Umbilical Cord Stem Cells, as people know bush vitod it and made it illegal.

Im very puzzled you believe that. UMSCs arent regarded as part of the baby, it survives very well without it once born, so there should be no problem with treatments being developed that utilize them.

just worked it out, its the suing culture, if it didnt work I could sue, in China it would get thrown out.

Quote from: Privateer

Quote from: zpyderI hate to be such a downer, but the thing that gets me about that site is, the fact that publications like New Scientist, which though glossy, tend to contain the groundbreaking news stories of the science world. They frequently publish articles on stem cell research.

However the latest issues all detail some form of stem cell research still at the lab and test rat/mouse stage. The closest I think I can remember to human trials was a statement that a technique mentioned would be ready in a couple of years for human trials. That site is, to me, the equivalent of a website being made 5 years ago advertising todays modern tech computers. Its possible, but not available quite yet. If it was it would have been on the BBC and all other major news channels much like Dolly the sheep. The labs leading the forefront of this kind of research are striving to be the first to achieve their goals, the second they can itll hit international headlines, not a website that is linked to on a forum...

It could of course be that these different patient reports are the result of trials that arent of the standard required for true scientific recognition. A lack of control groups and proper protocols etc. But then if this is the case, you have to ask yourself how many more people took part in the trials with no signs of treatment effect on them, or even negative effects, which the site may exclude from publishing.

if you were in my shoes, you might see things differently, some people have severe reactions, but I m at the stage where nothing matters

You clearly hold your kids in high regard then.

Id rather live 20 years disabled with my children, than die because of impatience and never have the chance to see my children grow up.

Quote from: M3ta7h3ad

Quote from: Privateer

Quote from: zpyderI hate to be such a downer, but the thing that gets me about that site is, the fact that publications like New Scientist, which though glossy, tend to contain the groundbreaking news stories of the science world. They frequently publish articles on stem cell research.

However the latest issues all detail some form of stem cell research still at the lab and test rat/mouse stage. The closest I think I can remember to human trials was a statement that a technique mentioned would be ready in a couple of years for human trials. That site is, to me, the equivalent of a website being made 5 years ago advertising todays modern tech computers. Its possible, but not available quite yet. If it was it would have been on the BBC and all other major news channels much like Dolly the sheep. The labs leading the forefront of this kind of research are striving to be the first to achieve their goals, the second they can itll hit international headlines, not a website that is linked to on a forum...

It could of course be that these different patient reports are the result of trials that arent of the standard required for true scientific recognition. A lack of control groups and proper protocols etc. But then if this is the case, you have to ask yourself how many more people took part in the trials with no signs of treatment effect on them, or even negative effects, which the site may exclude from publishing.

if you were in my shoes, you might see things differently, some people have severe reactions, but I m at the stage where nothing matters

You clearly hold your kids in high regard then.

Id rather live 20 years disabled with my children, than die because of impatience and never have the chance to see my children grow up.

ok

That reminds me, I must sign a living will.

Longest email ever, but it from my China contact.


Ataxia Treatment with Stem Cells

Contents

1.      Opening remarks

2.      Types of Ataxia that are treatable

3.      Pricing information

4.      Related articles of interest

 

The word "ataxia" comes from the Greek word "a taxis" which translates to "lack of order".  The word ataxia has come over time to mean "without coordination".  We at Beike are extremely proud of our work with patients suffering from this disorder.  Over the years we have treated a wide array of Ataxia "types" including but not limited to those you will see below as well as "Sporadic Ataxia".  Our patients typically respond quickly and some even dramatically to treatment.  Review of our patient data reveals that 9 out of 10 of our patients with Ataxia see measurable improvements prior to discharge.  

Ataxia is in fact a neurological sign and/or symptom consisting of gross in-coordination of muscle movements.   It is a non specific clinical manifestation which defines a dysfunction of parts of the nervous system that coordinate movement, such as the cerebellum.  Individuals with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements.

In this age the term ataxia is often used to describe a symptom which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias.  Several possible causes exist for these patterns of neurological dysfunction.

 

 

If you do not see your diagnosis mentioned here please ask your consultant for further information as we have many pre-formatted and specialized templates on a wide array of frequently treated disorders.

 

Cerebellar ataxia

The term Cerebellar Ataxia is used in reference to ataxia secondary to a primary dysfunction of the cerebellum. This is the type of Ataxia the majority of our patients come to us with.  How the patients abnormalities manifest depend on which cerebellar structures are lesioned, and whether the lesion is bilateral or unilateral. Each patient presents with his or her own unique pattern of cerebullar involvement.  Vestibulo-cerebellar dysfunction presents itself most often in patients where the person tends to separate the feet upon standing to gain a wider base.  This carries over when walking and presents with a wide-based "drunken sailor" gait.  

Cerebro-cerebellar dysfunction often presents with disturbances in carrying out voluntary movements, including tremors possibly even involving the head and eyes as well as the limbs and torso.  Writing abnormalities (large, unequal letters, irregular underlining) are also frequently noted as well as a pattern of dysarthria (slurred speech).  Pre and post evaluations have shown that all these areas can be improved upon through the combination treatment we offer.

 

Hereditary Ataxias

Ataxia may be a result of a hereditary disorder in which degeneration of the cerebellum and/or of the spine is present.  We have found within our work that most cases involve both to a certain extent.  Hereditary disorders causing ataxia include but are not limited to autosomal dominant disorders such as Spinocerebellar Ataxia, Episodic Ataxia as well as autosomal recessive disorders such as Friedreichs Ataxia.

 

Spinocerebellar Atrophy and Spinocerebellar Degeneration

Spinocerebellar Ataxia Types 1 and 2, Sporadic Spinocerebellar Ataxia Types 2 and 3

Ataxia often occurs when parts of the nervous system that control movement are damaged. People with ataxia experience a failure of muscle control in their arms and legs, resulting in a lack of balance and coordination or a disturbance of gait. While the term ataxia is primarily used to describe this set of symptoms, it is sometimes also used to refer to a family of disorders. It is not, however, a specific diagnosis.  Most disorders that result in ataxia cause cells in the part of the brain called the cerebellum to degenerate, or atrophy. Sometimes the spine is also affected. The phrases cerebellar degeneration and spinocerebellar degeneration are used to describe changes that have taken place in a person's nervous system; neither term constitutes a specific diagnosis. Cerebellar and spinocerebellar degeneration have many different causes. The age of onset of the resulting ataxia varies depending on the underlying cause of the degeneration.

 

Many ataxias are hereditary and are classified by chromosomal location and pattern of inheritance: autosomal dominant, in which the affected person inherits a normal gene from one parent and a faulty gene from the other parent; and autosomal recessive, in which both parents pass on a copy of the faulty gene. Among the more common inherited ataxias are Friedreich's ataxia and Machado-Joseph disease. Sporadic ataxias can also occur in families with no prior history.

 

Acquired Ataxia

Ataxia can also be acquired. Conditions that can cause acquired ataxia include stroke, multiple sclerosis, tumors, alcoholism, peripheral neuropathy, metabolic disorders, and vitamin deficiencies.

 

Machado-Joseph disease (MJD) (spinocerebellar ataxia type 3-is a rare hereditary ataxia)

The disease is characterized by clumsiness and weakness in the arms and legs, spasticity, a staggering lurching gait easily mistaken for drunkenness, difficulty with speech and swallowing, involuntary eye movements, double vision, and frequent urination. Some patients have dystonia (sustained muscle contractions that cause twisting of the body and limbs, repetitive movements, abnormal postures, and/or rigidity) or symptoms similar to those of Parkinsons disease. Others have twitching of the face or tongue, or peculiar bulging eyes.

 

Olivopontocerebellar Atrophy

OPCA is a term that describes the degeneration of neurons in specific areas of the brain – the cerebellum, pons, and inferior olives.  OPCA is present in several neurodegenerative syndromes, including inherited and non-inherited forms of ataxia (such as the hereditary spinocerebellar ataxia known as Machado-Joseph disease) and multiple system atrophy (MSA), with which it is primarily associated.

 

Early Stage Ataxia Telangiectasia
Ataxia-telangiectasia is a rare, childhood neurological disorder that causes degeneration in the part of the brain that controls motor movements and speech. Its most unusual symptom is an acute sensitivity to ionizing radiation, such as X-rays or gamma-rays. The first signs of the disease, which include delayed development of motor skills, poor balance, and slurred speech, usually occur during the first decade of life. Telangiectasias (tiny, red "spider" veins), which appear in the corners of the eyes or on the surface of the ears and cheeks, are characteristic of the disease, but are not always present and generally do not appear in the first years of life.

 

 

I am now your personal medical consultant and contact person.  You can reach me at westwellness@hotmail.com.   Please let me know if you have any further questions.

 

In Health ... Dr. Monique West

 

 

 

Prices for Beike Biotech Stem Cell Treatments

 

The following prices are valid from December 15th 2007 to March 15th 2008.

Please Note: Prices for treatments in China are reviewed on a quarterly basis and are therefore subject to change.  

Previous prices do not apply for anyone arriving after December 15th, 2007.

 

Basic treatment program (20 to 35 days):  

The choice of how many SCT's to have is ultimately up to the client but we do advise that you follow the recommendations of your medical consultant.

> 4 SCT's are $20,000.00 USD (20K) ...20 day stay

> 5 SCT's are $23,300.00 USD (23.3K) this is a savings of $200.00 USD if the arrangements for 5 SCT's are made at the time of your registration ...25 day stay

> 6 SCT's are $26,300.00 USD (26.3K) this is a savings of $700.00 USD if the arrangements for 6 SCT's are made at the time of your registration ...30 day stay

> 7 SCT's are $29,300.00 USD (29.3K) this saves you a total of $1200.00 USD if the arrangements for 7 SCT's are made at the time of your registration ...35 day stay

 

**These discounts do not apply if you wait until you are on site to opt for additional stem cell transfusions**  

 

NOTE:

Each transfusion contains approximately 10 to 15 million stem cells.  Along with each transfusion patients are also given a transfusion of Neural Growth Factors.  Transfusions are given IV and/or via transfusion into the Cerebral Spinal Fluid.  This determination is made on site by the treating medical team.  

 

 

Included are free transportation to and from the hospital and the local airport (certain exceptions do apply please see notes below) and free accommodations at the hospital for the client and one caregiver.  We also offer a complementary rehabilitation program.  This therapy which is customized for each individual patient is provided free of charge and may be 2 to 4 hours done 4 to 6 times per week depending on the patient's ability to participate (Sunday's off).  Meals and laundry service are not included.  Meals are not served at hospitals in China. You can have your laundry picked up and done by an outside service at a reasonably low price.

 

You can request if you wish to have all stem cell transplants by IV only.

 

* Additional transfusions booked at least one month prior to treatment (this is on a case by case basis depending on room availability) are US $3,500 each.  Each transfusion may require an additional 2-5 days in the hospital.  This option is only available to those already participating in a full treatment program.

 

** If you opt for additional transfusions outside of the above parameters and/or during your hospital stay they will be $3,900 US each.  This may require an additional time in the hospital and/or that you stay in a hotel near the hospital, which would be at your own cost.  This option is only available to those already participating in a full treatment program.

 

 

Bone Marrow Surgery: there is an additional cost of $5000.00 USD for this procedure if booked at the time of your registration.  If booked on site the cost is $5500.00 USD.  If you are interested in obtaining this in addition to the above treatment please let us know at the time of your registration.  This procedure is only available at Shenyang Hospital and is only available to those already undergoing a full treatment program.  We must know at the time of your booking if you wish to have this procedure.  This option is only available to those already participating in a full treatment program.  For more information on this procedure please ask your medical consultant.

This procedure is not suitable for children.

 

Transportation by ambulance; if you are not able to be transported in a van and will require transport by ambulance there is an additional cost of $800.00USD per trip (one way).  This must be arranged for in advance so please let us know if this is a concern for you.

 

Electric Wheelchairs; We advise that you bring the lightest and most compact chair you have.  Large, heavy, non-folding or non-collapsing chairs are very difficult to travel with and to transport in our SUV type vans which do not have ramps or lifts.

Shanghai Airport; if you are traveling to Hang Zhou City for your treatment and wish to fly into Shanghai rather than Hang Zhou we can arrange pick up and transport for you.  There is an additional round trip fee of $450.00 USD for this service. We do not advise that you take this option during winter months as the road is occasionally closed due to severe weather conditions and this might strand you in Shanghai for a day or two.
Hang Zhou's Xiashan Hospital; currently this is the only location with a "handicap" van equipped with a lift.

PLEASE NOTE:

A deposit of approximately 20% is required to be made within two weeks of booking your treatment.  Deposits are considered non-refundable except in the case of medical / emergency situations and proper documentation of such must be supplied and verified.  Should a refund be issued you will be expected to pay all banking fees which apply to all transactions.
We have a flat transaction fee of $100 per transaction that will be charged to the client.  This is a pre-set "penalty and processing fee" for cancellations and refund transactions.  A transaction is each time money has been moved into our account and when we have to move it back out as a refund.  
If you wish to apply for a refund you must do so at least 30 days prior to your arrival date.   No refunds are given within 30 days of your arrival date.  
If for any reason you cancel within the 30 day time frame no refund will be granted.  If a medical emergency arises and you are unable to travel and the proper documentation is supplied we can and will rebook you.  If this should occur there may be a rebooking fee of $1000.00 which must be paid prior to new treatment dates being given.
If you need to rearrange your dates after your original booking we will be happy to carry over your deposit to your new travel dates.  However all payment due dates will remain unchanged.
Your final payment is due 30 days prior to your arrival date. We will give you exact due dates at the time of your registration.
If during your hospital stay you become ill and/or require medical treatment as a result of something other than an issue related to the stem cell treatment you will be responsible for the payment of the additional care to the hospital.
If for some reason you opt to extend your stay in the hospital please note that you may be charged an additional $200.00 USD per day for hospital fees.
 

Prices for treatments in China are reviewed on a quarterly basis and are therefore subject to change.  As the market value of the "dollar" changes in relation to China's currency of RMB we must alter the prices in USD to match its relational value to the RMB.  Please note that while it may seem as if the price is increasing it is in fact not as the prices are keep stable in RMB currency.  Rather it is the currency exchange rate which is constantly changing and we must alter our quoted prices to reflect this.  All prices are set in USD as it is considered to be the standard world exchange and therefore all payments must be made in US Dollars.  We find it best to review prices every three months and make adjustments on a quarterly basis.

 

 

Extended Family of Six Canadians All Improve their Quality of Life with Stem Cell Treatment in China

 

Shenzhen, CHINA – September 18th, 2006 -- Shenzhen Beike Biotechnology Co., Ltd. (Beike) announced the successful treatment of a family of six related Canadians all suffering from Spinocerebellar Ataxia Type 2 (SCA2), a debilitating disease characterized by general slowing of some of the body's normal processes.  The six relatives, ranging in age from 19 to 51, all recorded significant improvements in their quality of life after receiving treatment with stem cells at the Nanshan Hospital in Shenzhen, China.  The announcement comes one month after the last relative comfortably reached home in Canada.  Details can be found on the website, http://www.stemcellschina.com.

In April 2006, Beike provided umbilical cord stem cells to treat 45 year old Timothy Graf and his 19 year old daughter Kymberly, who traveled from their home in Saskatoon, Canada to Shenzhen, China for the procedure.  While Tim was only beginning to feel the effects of SCA2, his daughter had already experienced symptoms for nearly 6 years, making bodily coordination difficult and affecting her studies at the University. Both father and daughter underwent the same treatment consisting of injections of umbilical cord stem cells intravenously and into the cerebral spinal cord fluid.  The treatment took place over a one month period and included daily rehabilitation therapy.  

Encouraged by Tim and Kymberly's improvements during their treatment and suffering from the same disease, Tim's brother Keith Graf (44) and cousin Brian Knoblauch (48) immediately made plans to go to China, arriving at the end of their treatment term in April. Tim's cousin Val Crowter and her son Jason, also suffering from Spinocerebellar Ataxia, arrived in June for treatment after contacting Tim and hearing the encouraging news.  Due to national regulations, none of the 6 patients could receive treatment in Canada.  All of the six had seen doctors in Canada, but each was told that there was nothing that could be done to treat the disease in North America.  While they all had the same hereditary disease, their symptoms were slightly different with each at different levels of progression.  

Tim Graf said "I have seen my relatives suffer from this disease and pass away after doctors in Canada said there was nothing you can do.  Well we did something and it seems at least for now, it has given all of my relatives some improvement in life quality and some hope.  I doubt we will be the last of our relatives to get this treatment"

Treatments for leukemia and other diseases with umbilical cord blood stem cells have been performed for years.  However, the treatment of stroke patients, spinal injury patients, and those with other neurological diseases with stem cells from human umbilical cords has only recently become popular.  Today, treatments for neurological diseases using umbilical cord blood is being taken forward by countries outside the United States, including China, as FDA approval takes longer.  

Tim Graf felt improvement in energy, walking upstairs, balance, and in his ability to focus on objects for longer periods of time.  Tim's daughter Kymberly Graf improved her speech, walking, balance, and ability to type.  She also lost much of the starry-eyed look associated with Ataxia.  Keith Graf also lost the starry-eyed look and improved his stability.  Brian Knoblauch was relieved of all of his muscular cramps, which had been bothering him for over a decade. His speech and balance also improved. Val Crowter was able to get rid of most of the cramps that had bothered her for years as well as improve her walking and speech. She was able to write her name for the first time in a long time as well.  Her son Jason's writing also improved along with his balance and his speaking.  Most of his cramping also disappeared. More specific details on the patient's progress can be found at http://www.stemcellschina.com.

Charlene Toop, Brian Knoblauch's wife said, "When Brian came home, I noticed some real changes. I couldn't hear him walking about the house any more since he stopped his usual manner of walking on his heels.  His speech improved greatly and he started carrying cups of beverages without spilling them, although he still pretends to shake once in awhile though when he wants me to bring him coffee down to the basement. I am just happy that he is better, so I pretend to believe him and oblige."

Val Crowter said, "When I heard my relatives had gone to China and had such good results, I thought I would go and try. And I am thankful that I did as these cramps have been bothering me so much for so many years. I still have some in my hands and feet but I can tell you its like night and day, and I am sleeping better than I have for years."

Dr. Sean Hu, chairman of Beike, said, "After seeing the results for Tim and Kymberly, we were pretty confident that the rest of the family members would show improvement since they were related and all had the same genetic disease.  In fact, so far all of the Ataxia patients Beike has treated have seen improvement.  Although positive treatment effects do not always last, we are very happy Beike could make such a difference in the lives of this great group of relatives.

 

Raising Funds for Stem Cell Surgery
 
 

 

Wednesday, 09 May 2007
 

 Leader Post

Brad Suchans buddies hope their Friday night fundraiser will buy their Regina friend a ticket to China and to improved health.

Five years ago, Suchan was diagnosed with hereditary ataxia, a degenerative disease of the spinal cord or cerebellum. This fall hes planning to travel to China to have stem cell replacement surgery so that he can get his life back on track.

The condition attacks his nervous system, disrupting his balance and co-ordination and sidelining his sports life.

"I used to be able to play hockey, football, baseball, tennis - pretty much every sport," Suchan said. "If I play baseball I can hit, but its really hard to catch and Im unbalanced when I run."

The 28-year-olds speech is also affected.

"If Im with people that I dont know, people think Im drunk because I slur sometimes," Suchan said. "My mom had it and she passed away in 1989."

Suchans Regina neurologist has told him theres nothing that can be done to cure him of the symptoms. But since his cousin and uncle also have hereditary ataxia, Suchan has heard of some options.

His cousin wasnt prepared to let the disease take its course so he went to Shen Zhen, China for stem cell replacement surgery about three years ago.

"My cousin was worse than I am - he always had to repeat what he was saying because people couldnt understand him," Suchan said. "My driving is getting worse and his is back to normal now. People who were paralysed with this can now walk."

He plans to go to China for the treatment in the fall.

"You get stem cell replacements once a week for five weeks and then youre there to recover for a couple of days and then you fly back and recover for another six weeks," Suchan said.

Since the treatment is considered experimental, its not being done in Canada and Suchan cant tap into any government funding to pay for his flight or for those who accompany him. Not only does he have to come up with money for travel and his relatives accommodations, but the regimen is pricey.

"The surgery alone is $25,000," Suchan said.

Thats where his friends hope to help.

Greg Hern and nine other buddies are holding a fundraiser dinner and cabaret on Friday night at the Turvey Centre.

"Weve got some prizes donated - like an autographed (Saskatchewan Roughriders) jersey, a centralized air conditioner that were going to auction off and a Jon Ryan autographed framed picture from him in Green Bay," Hern said. "The larger items will be for a silent auction. We want to raise as much money as possible."

The group of friends sold 275 supper tickets for $30 each before the Tuesday deadline. They hope that the Turvey Centre will be packed for the cabaret. The $10 tickets will be available at the door.  

Buddies for more than 15 years, Hern met Suchan playing hockey.

"We want to help out Brad - hed do it for us," Hern said.
 

 

Ex-Mayor Audrey in fight for life      

6/12/2007

A FORMER Lord Mayor of Manchester is to undergo pioneering stem cell treatment in China in a bid to halt an otherwise fatal brain disease.
Councillor Audrey Jones, who helped to co-found the South Manchester Reporter in the 1970s, has been diagnosed with cerebellar atrophy, a rare progressive condition with symptoms likened to motor neurone disease.
She said: "It's like a death sentence with no respite."
Accompanied by her husband Ray, the mother of four grown-up children will fly to China on January 9 where 30 days of treatment in hospital at Qingdao, east of the Chinese capital Beijing, is due to begin the following day.
When Coun Jones, who lives on Heaton Road, Withington, became Manchester's first Liberal Democrat Lord Mayor in 2003, she was already suffering from early symptoms of her illness but it was not fully diagnosed until November of last year.
"I had a cataract operation before my term in office after which my eyes didn't seem to work together, making it difficult to read," she said.
"While I was Lord Mayor my attendants knew I had difficulty with co-ordination because I couldn't walk up or down steps unless they held my arm, but we managed and it was not obvious to anyone else that there was something wrong with me.
"When they finally put a name to my condition I was shocked and depressed because there is no cure.
"The doctor at Manchester Royal Infirmary said I would need stem cell treatment but it would not be ready in this country in my lifetime.
"The worst aspect is that, over time, I will lose all voluntary movement. My doctor says it is progressing slowly, but I don't think so. When I was diagnosed a year ago I could walk. Now I can only do so with great difficulty, holding on to someone."
Her daughter Helen, who had been Lady Mayoress when Coun Jones was first citizen, was sent a newspaper article by her mother-in-law in Scotland about a man who had received successful stem cell treatment in China.
"I contacted the chap in the article and he put us in touch with the Chinese authorities," said Coun Jones.
"It may not work for me," she added ruefully. "And if it doesn't work, that's my last chance. But I have to be optimistic."
Coun Jones has begun the process of resigning her council seat in the city's Withington ward, which she has held for almost 30 years.
She was Manchester's first Liberal councillor of the modern era and for a time was the party's only elected representative at the town hall.
"That was a tough time," she said.
Before becoming Lord Mayor she had sought nomination for the post more than a dozen times, determined each year to challenge Labour's monopoly of the position. Eventually a proportionality deal was struck in 2002 and Coun Jones at last realised her ambition.
She chose not to return to her profession in pharmaceutical research after raising her family but instead co-founded the South Manchester Reporter as a community newspaper in the late 1970s. It is now owned by the Guardian Media Group.
Father's Quest for a Few More Years

 
 
 
Journal Live

By Jane Hall
   
A MAN dying of a degenerative brain disease will today start controversial stem cell treatment in an effort to gain precious extra years with his family.

Scott Nugent, 35, from Whitley Bay, North Tyneside, last week flew to China for the month long treatment which could change his life forever.

And today he will have the first of four injections he hopes will prolong his life long enough to see two-year-old son George grow up.

Mr Nugent suffers from the rare inherited genetic disorder spinocerebellar ataxia - which has claimed the lives of his eight-month-old son Oliver and mother June, 58.

There is no cure or treatment for the illness, which leaves sufferers unable to walk, talk, eat or see. But Chinese doctors working for the Bieke Corporation have had some success with stem cell treatment in easing the symptoms for other ataxia victims.

Mr Nugent's wife Louise, 37, a former primary school teacher who now cares for Scott and George full-time, said last night the family had every faith that the procedure would give her husband back his life.

"The doctor treating Scott has told him he has recently treated three or four other British people who suffer from ataxia and that they had shown improvement. Scott is in good spirits and wanting to get on with the treatment. People keep asking if we are worried about it and I keep saying we were more worried about the long journey from Newcastle to China.

"I don't know if we are being naive in not being worried, but we have every faith in the hospital and its staff."

Mr Nugent is being treated in HangZhou, 112 miles from Shanghai, at a cost of ?14,000, raised with the help of Journal readers, family and friends.

Stem cell treatment is currently only available in China. The procedure involves Mr Nugent being injected four times over four weeks with stem cells taken from the umbilical cords of healthy full-term babies in an attempt to repair his damaged brain cells.

The former software engineer for Vickers in Scotswood, Newcastle, first began displaying the symptoms of spinocerebellar ataxia when he was 24. Today Mr Nugent, who should be looking forward to the best years of his life, is having to face up to his own mortality as his nerve endings are slowly destroyed and his body shuts down.

Both Mr and Mrs Nugent know the stem treatment will not be a cure. But as he prepared to fly to China last week, Mr Nugent told The Journal: "This is a journey I have to make. There is no hope otherwise. I can't get the treatment done in the UK or Europe, so I've got to go to China.

"I am desperate, really desperate. I just want to prolong my life for Louise and George. I am scared to leave George early.

"I don't want to lie in bed dying. I want some extra years, even if it's only two or three. It is going to be five years at least before treatment currently being researched here will be viable for me, but I don't have that sort of time."

If all goes well Mr Nugent will fly back to the UK on August 11.

 

Below is Scott in China with Dr. Ma
 
 

 

 

August 13, 2007

Positive About Future
 
 

 

 
 
The Journal Live

by Chloe Griffiths
   
A TERMINALLY-ILL father has returned home from a trip to China after revolutionary medical treatment which he believes has given him precious extra years with his family.
 
Scott Nugent, from Whitley Bay, North Tyneside, flew into the North-East on Saturday after spending five weeks in the Far East undergoing ground-breaking stem cell treatment.

The 35-year-old suffers from the fatal genetic disorder Spinocerebella ataxia, and while there is no cure, Chinese doctors have had some success at relieving the symptoms.

Scott believes the treatment – which is not available anywhere else – will slow the rare neurological condition long enough for him to see his two-year-old son George grow up.

Yesterday, he was still recovering from an exhausting 32-hour journey home with his wife Louise, 37, a former primary school teacher, and son, but he told how he believes the treatment has given him a couple of extra years to spend with his family.

He said: "I'm extremely tired. The doctors said it would take about a week to get over the journey home and return to the levels I had reached, but by the time I left the hospital I was really pleased.

"I'm positive about the future. I feel like it's given me extra time – I hoped to have a couple of years, but now we think I could have three or four.

"I did all of this to spend extra time with my family and any improvement is worth the money and effort for me."

When Mr Nugent arrived in China, his co-ordination and mobility was assessed as just three out of a possible 56 on a scale used by doctors to measure his health. By the time he left he had risen to 25.

His speech and eyesight had also improved, and he could complete in 11 minutes a walk of five laps of the hospital which had previously taken him 18-and-a-half minutes

The stem cell treatment involved the former software engineer being injected four times over four weeks with stem cells taken from the umbilical cords of healthy, full-term babies in an attempt to repair his damaged brain cells. He also underwent intensive physiotherapy.

He said: "After each of the spinal injections I had to lie still for six hours, I couldn't move at all. I wasn't allowed to eat for three hours before and six hours after, so there was nine hours without food and drink.
 
"It was very hard, but I could see the improvements. If I went from a score of three to 25, then it was worth it."

But for the father the toughest part of the trip was being separated from his family.

"The hardest thing was being away from my family, I had no idea how difficult that would be. I'm so pleased to be back with them and back in the North-East."
 
Mr Nugent was treated in Hangzhou, 112 miles from Shanghai, at a cost of ?14,000 which was raised with the help of The Journal readers, family and friends.

He was accompanied by his friends Len Harvey and Steve Payne, and yesterday he paid them heartfelt thanks. He said: "I couldn't have managed without them. At first I didn't think I would need someone all the time, but they were a god-send.

"Without their help I don't know if I would have managed."

'You can't put a price on results'

THERE is no cure for the degenerative brain disease gripping Scott Nugent.

Sufferers of the fatal genetic disorder Spinocerebella ataxia are gradually unable to walk, talk, eat or see.

The rare neurological disorder has already claimed the lives of Mr Nugent's eight-month old son Oliver, and his mother June, 58.

There is no stem cell program for the treatment of disease in the UK, America or Europe, but Chinese doctors have had some success easing the symptoms for other ataxia victims using controversial stem cell treatment.

The procedure involves injecting stem cells from the umbilical cords of healthy, full-term babies into the bloodstream and base of the skull, accompanied by intensive physiotherapy.

Mr Nugent said: "There were a lot of children in the hospital.

"Seeing three or four-year-old children who couldn't walk was a very humbling experience.

"There was a lad from Hungary, only about four years old, who was completely paralyzed, but by the end he was walking about.

"People say it is a placebo, but how can that be the case with a four-year-old. It shows what it can achieve and you can't put a price on it."
 



 

About Beike Biotech Company Limited

Beike is a biotechnology company that was founded with capital from Beijing University, Hong Kong University of Science and Technology and Shenzhen City Hall. It is also supported with funds from the China State National Fund. The research and clinical work is a collaboration of Beijing University, Hong Kong University of Science and Technology, No. 3 Army Medical University, Zhongshan Medical University, Guiyang Medical College and Zhengzhou University.

 

 

These summaries significantly simplify the findings in the original studies. Like any overview of a complex topic, oversimplifications are inevitable. This document attempts to provide the most accurate information in easily understandable terms

Updated by Kirshner Ross-Vaden 12/16/07

Written and copyrighted by Kirshner Ross-Vaden RN 12/5/06 for the sole use of Beike Bio-Tech and Stem Cells China.

Any reproduction and/or use of this document by any other person and/or company is illegal.

All Beike health-related material is provided for information purposes only. This includes advice on the treatment and/or care of an individual patient obtained through consultation.

 

Longest...post...ever...

Quote from: M3ta7h3ad

Quote from: Privateer

Quote from: zpyderI hate to be such a downer, but the thing that gets me about that site is, the fact that publications like New Scientist, which though glossy, tend to contain the groundbreaking news stories of the science world. They frequently publish articles on stem cell research.

However the latest issues all detail some form of stem cell research still at the lab and test rat/mouse stage. The closest I think I can remember to human trials was a statement that a technique mentioned would be ready in a couple of years for human trials. That site is, to me, the equivalent of a website being made 5 years ago advertising todays modern tech computers. Its possible, but not available quite yet. If it was it would have been on the BBC and all other major news channels much like Dolly the sheep. The labs leading the forefront of this kind of research are striving to be the first to achieve their goals, the second they can itll hit international headlines, not a website that is linked to on a forum...

It could of course be that these different patient reports are the result of trials that arent of the standard required for true scientific recognition. A lack of control groups and proper protocols etc. But then if this is the case, you have to ask yourself how many more people took part in the trials with no signs of treatment effect on them, or even negative effects, which the site may exclude from publishing.

if you were in my shoes, you might see things differently, some people have severe reactions, but I m at the stage where nothing matters

You clearly hold your kids in high regard then.

Id rather live 20 years disabled with my children, than die because of impatience and never have the chance to see my children grow up.

I dont think any of us know what we would do in this situation

I know I would do everything in my power to try and find a way out

Quote from: Mark

Quote from: M3ta7h3ad

Quote from: Privateer

Quote from: zpyderI hate to be such a downer, but the thing that gets me about that site is, the fact that publications like New Scientist, which though glossy, tend to contain the groundbreaking news stories of the science world. They frequently publish articles on stem cell research.

However the latest issues all detail some form of stem cell research still at the lab and test rat/mouse stage. The closest I think I can remember to human trials was a statement that a technique mentioned would be ready in a couple of years for human trials. That site is, to me, the equivalent of a website being made 5 years ago advertising todays modern tech computers. Its possible, but not available quite yet. If it was it would have been on the BBC and all other major news channels much like Dolly the sheep. The labs leading the forefront of this kind of research are striving to be the first to achieve their goals, the second they can itll hit international headlines, not a website that is linked to on a forum...

It could of course be that these different patient reports are the result of trials that arent of the standard required for true scientific recognition. A lack of control groups and proper protocols etc. But then if this is the case, you have to ask yourself how many more people took part in the trials with no signs of treatment effect on them, or even negative effects, which the site may exclude from publishing.

if you were in my shoes, you might see things differently, some people have severe reactions, but I m at the stage where nothing matters

You clearly hold your kids in high regard then.

Id rather live 20 years disabled with my children, than die because of impatience and never have the chance to see my children grow up.

I dont think any of us know what we would do in this situation

I know I would do everything in my power to try and find a way out

mark falling over and not knowing why is so frustrating and getting up is nearly impossible, i carry a panic button all the time, I hope my trip to china fixes that.

Quote from: zpyderLongest...post...ever...

I think so, but as you can see your first opinions were wrong.

Im sorry if I was, and I hope I am, but Im waiting to hear from you after the treatment and for the reports on improving health before changing my opinion.

Blame it partly on my training to be overly critical about things :?

Anyway, bonne voyage and good luck.

who wants free accommodation in a hospital.

Quoteand free accommodations at the hospital for the client and one caregiver

All I need is help in the airport and on the plane.

Quote from: zpyderIm sorry if I was, and I hope I am, but Im waiting to hear from you after the treatment and for the reports on improving health before changing my opinion.

Blame it partly on my training to be overly critical about things :?

Anyway, bonne voyage and good luck.

they have a 9/10 success rate knowing my luck Ill add to their failure list.

but Im also a realist, Stem Cells are living, they have to do something.

Best of luck privateer - I really hope it works out for you.

When you going?

Quote from: Privateerbut Im also a realist, Stem Cells are living, they have to do something.

So is cabbage.

Im refraining from saying anything since its clearly important to you but if you do end up on their failure list - dont feel youre unlucky to be in the 1/10.  Instead question if theres really a 9/10 success rate and ask for your money back.

Hope it works for you either way

just spoken to him, they have treated over 2000 Ataxia patients, not 1 failure so far.

their failures are on ALS and cancer.

QuoteHi David,
 
Good news, you have been accepted for treatment.
 
I need to know now what date you want your treatment to start? When you have this date you will need to make a 20% deposit of your treatment costs within 2 weeks of agreeing the start date. Then the full payment for treatment must be made 3 weeks before your start date. The cost of the treatment is $26,300, when you have agreed a date with me my colleague in China will take over from me and agree which hospital is best suited to you.
 
regards,


B MacNeill