This video features Brian MacNeill discussing his medical condition, Ataxia, and the adult stem cell therapy he has received to control symptoms. The YouTube video is in four parts. A full version can be found at Vimeo through a search for "brian ataxia"
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Brian - Ataxia Survivor Part 1 - Video
Kyle Bryant talks about living with Friedreich's Ataxia and efforts nationwide and at the University of South Florida to raise funds for the little-known yet life-altering neurological disease.
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Kyle Bryant on Living With Friedreich's Ataxia - Video
http://www.Alfred.TV READ ME FIRST Join me with Dr. Howard Lederman from Johns Hopkins Medicine as he provides us with an overview of the genetic disorder, Ataxia Telangiectasia, better known as "AT". Dr.
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Webcast : Ataxia Telangiectasia (AT) - Video
Martin "Marty" Bentler has been living with some degree of Ataxia for the past 20 years. Sick and progressively getting worse, he found no interest in his doctors to improve his quality of life. They called when they had a new test.
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Martin - Ataxia Stem Cell Patient
Ataxia - The Sides Amateur music video by me, using footage from Skateboard Kings.
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Ataxia - The Sides (Music Video)
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Joseph Pomykal is 23 years, suffers from Friedreichs Ataxia and is from the USA Joseph got treated in February 2009, he got 4 times NSC/MSC lumbar puncture.
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Joseph, Friedreich's Ataxia, before stem cell treatment at Tiantan Puhua Hospital Beijing
Leila Navidi
Mercy Doyle, 6, visits with Tina Lindquist, the program director at Brain Balance Achievement Centers in Henderson on Wednesday, May 23, 2012. Doyle has been diagnosed with the rare neurological disorder Opsoclonus MyoclonusSyndrome.
By Conor Shine (contact)
Thursday, May 24, 2012 | 2 a.m.
Six-year-old Mercy Doyle is like a lot of girls her age.
She loves coloring, swimming and The Little Mermaid. She looks up to her big sister and finds her younger brother kind of annoying.
But to doctors in Nevada and around the country, Mercy is a medical mystery, a child with a unique set of symptoms theyve never seen before.
Mercys medical odyssey began seemingly overnight, her parents say, four years ago during a family vacation to the beach in California.
She kept falling in the sand. She couldnt run around. She was shaky. It was weird, said her father, Kevin Doyle, a worship pastor at Green Valley Christian Center.
Her family rushed back home to Henderson, where Mercy was diagnosed with a viral infection that was attacking her brain. After a few months, her condition seemed to be improving. Then her symptoms worsened again.
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Prayer for Mercy: Henderson family seeks a cure for 6-year-old's unique condition
ANAHEIM Lucas Appleton wheeled himself toward the wrought-iron safety gate separating him from the ride he was about to experience Luigi's Flying Tires, a personal hovercraft attraction in Cars Land.
As he watched the super-sized "flying tires" bumping and bouncing their way across an expansive arena, he inched his wheelchair closer and closer to the gate. It wasn't long before his front wheels started drifting upward.
Lucas Appleton, 9, at left, with his brother William, 13, makes a funny face at his parents while waiting for Mater's Junkyard Jamboree ride to start. Make-A-Wish made it possible for Lucas, of Grover Beach, to go to California Adventure's new Cars Land attraction before it officially opened.
MINDY SCHAUER, THE ORANGE COUNTY REGISTER
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If you'd like to donate
Lucas Appleton's family is raising money to buy him a service dog, expected to cost $12,000 to $15,000. To make a donation to the Lucas Appleton Trust Fund, which is being maintained at Rabobank in Pismo Beach, call the bank at 805-773-5255 and ask to speak with the branch manager.
"Not that close, buddy!" a ride operator cheerfully reminded the 9-year-old boy.
"He's so excited," said his mother, Cassandra, shaking her head as she warned him (again) to not do wheelies in line.
Lucas, who has a rare form of muscular dystrophy called Friedreich's ataxia, was one of four kids with life-threatening illnesses who got to experience the new attractions at Disney California Adventure park Thursday through children's dream-granting charity Make-A-Wish.
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Make-A-Wish fulfills boy's dream to see Disney's Cars Land
The latest research on vitamin E is looking at the lesser-known forms of the vitamin, namely tocotrienols.
IF someone were to run a quick survey as to what is the most common exhortation uttered to a loved one whose health is not optimal, it would probably be, ?Take your vitamins?.
The term ?vitamins? has become part of modern popular nomenclature. It?s a quick and convenient way of assuaging the guilt felt by those who know they are not taking good care of their health.
Of course, nothing beats a healthy diet and lifestyle to take good care of health, but for many who find such activities bothersome and time-consuming, the vitamin appears, rightly or otherwise, to be somewhat of a solution.
The term vitamin describes organic substances that are chemically unrelated, but required in small quantities, for a variety of body functions. These are not manufactured by the body, so they need to be ingested to prevent disorders of metabolism. They can be broadly divided into water-soluble and fat-soluble vitamins.
Most of the vitamins we are familiar with today were ?discovered? in the early part of the 20th century. Through the years, studies have elucidated the many important functions of these substances.
In the next few months, we will be looking at one such vitamin, vitamin E, and the research that has been carried out on the many possible benefits this vitamin can confer.
Vitamin E primer
It is recorded that vitamin E was officially recognised in 1925. In 1969, the US Food and Drug Administration (FDA) formally recognised it as an essential nutrient for humans.
Vitamin E is a fat-soluble compound, and it has many biological functions, of which the best known is its antioxidant function. In a nutshell, it protects cell membranes from oxidation and destruction. Other functions include enzymatic activities, gene expression, and neurological function.
In terms of vitamin E deficiency, it is rare, and overt deficiency symptoms have not been found in healthy people who obtain little vitamin E from their diets.
However, as fat is required to absorb vitamin E, those with fat-malabsorption syndromes (such as Crohn?s Disease) are more likely to become deficient. Deficiency symptoms include peripheral neuropathy, ataxia, skeletal myopathy, retinopathy, and impairment of the immune response.
Those with inherited disorders such as Ataxia and Vitamin E Deficiency (AVED) can have such severe vitamin E deficiency that they develop nerve damage and lose the ability to walk unless they take large doses of supplemental vitamin E.
The first use for vitamin E as a therapeutic agent was conducted in 1938 by Widenbauer. He used wheat germ oil supplement that contains vitamin E on 17 premature newborn infants suffering from growth failure. Eleven out of the original 17 patients recovered and were able to resume normal growth rates.
Since then, many other studies have been carried out on vitamin E that looked at various aspects of health and metabolism.
In general, there are eight isomers of vitamin E, and these can be broadly divided into tocopherols (four sub-types) and tocotrienols (four sub-types).
Tocopherol is an important lipid-soluble antioxidant in the body. It protects cell membranes from oxidation, removing free radical intermediates and preventing oxidation reaction. Tocopherols can be found mostly in wheat germ oil, sunflower, and safflower oils.
Compared to tocopherols, tocotrienols are sparsely studied. This might be due to the fact that they were only discovered after tocopherols. Current research direction is starting to give more prominence to the tocotrienols, the lesser known but more potent antioxidants in the vitamin E family. Palm fruit oil is the richest source of tocotrienols.
Vitamin E and health
Many believe vitamin E has the potential to promote health and prevent diseases. This is because vitamin E is a powerful antioxidant, with additional roles in anti-inflammatory, inhibition of platelet aggregation, and enhancement of the immune system.
Studies, however, have shown mixed results. Several studies have associated higher vitamin E intakes with lower rates of heart diseases while randomised clinical trials raised a doubt on the efficacy of vitamin E supplements to prevent such diseases.
In general, such clinical trials have not provided evidence that intake of vitamin E supplements helps repress cardiovascular disease.
Other studies also looked at the effects of vitamin E on cancer, eye conditions and even cognitive decline. In general, these have not revealed conclusive results.
New directions in vitamin E
Over the years, research on vitamin E has looked mainly at alpha-tocopherol. And while hopes were high that vitamin E supplements would give a positive effect on health, the research does not largely support this notion. The results of the research did not look encouraging: vitamin E, even at large doses, does not decrease mortality in adults and may slightly increase it; it does not improve blood sugar control or decrease the risk of stroke; daily supplementation of vitamin E does not decrease the risk of prostate cancer.
A 2007 study concluded that supplementation with alpha-tocopherol did not reduce the risk of major cardiovascular events in middle aged and older men.
However, recent developments warrant a serious reconsideration of vitamin E. As mentioned, most of the studies above looked at the possible effects of tocopherols, not tocotrienols. Research on tocotrienols has indicated that they have neuroprotective, anti-cancer and cholesterol-lowering properties that are often not exhibited by tocopherols.
The structure of tocotrienols suggests a better penetration into tissues layered with multiple saturated fats, making them more suited for use as supplements and such.
Since the 1980s, there have been more studies on tocotrienol showing that they may be more potent in their antioxidation and other effects than the usual suspects in vitamin E.
There appears to be more to vitamin E than just tocopherols. Research has progressed to a stage where scientists have identified the additional unique properties and benefits of tocotrienols.
Malaysian connection
Looking at the overall research on vitamin E, it is prudent to take the wholesome full spectrum of vitamin E; rather than choosing between tocopherols and tocotrienols, as Mother Nature provides it.
Vitamin E supplements currently available in health food stores consist mainly of d-alpha tocopherol or d-mixed tocopherols.
It is interesting to note that the major form of vitamin E in the Western diet occurs in the form of gamma-tocopherol because of the abundance of soy and corn-derived products. On the other hand, in the Eastern diet, the major form of vitamin E is gamma-tocotrienol from palm fruit oil and rice-derived products. Maybe, the ideal vitamin E formula should consist of all the forms of tocopherols and tocotrienols.
This could explain why Carotech Inc, a public-listed company in Malaysia, is the world?s first and largest producer of natural full spectrum of tocotrienol and tocopherol-complex. It is also the only GMP-certified tocotrienol producer in the world. The company is now working with a number of leading researchers in the world, carrying out studies on tocotrienols and its effects on a wide range of health issues; from liver diseases to prostate cancer, s
kin rejuvenation as well as hair loss.
References:
1. Effects of vitamin E on ruminant animal ? scholarsresearchlibrary.com/ABR-vol2.../ABR-2011-2-4-244-251.
2. US National Institutes of Health ? Dietary Supplement Fact Sheet - Vit E. ods.od.nih.gov/factsheets/vitamine/.
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Exciting developments
14-01-2010 10:05 I have ataxic dysarthria from a stroke in 3/2/08 and had Brain surgery to remove the culprit AVM in 2/26/09. The AVM Cerebellar stroke left me with speech, balance and walking disorders that I have worked hard, through therapy, to over come. I am working with UW PT and the UW speech and hearing clinic. Recovery is a full time job, but if you view other videos of me on UTube, you will see it is paying off. I use Toastmasters to keep me motivated about speaking better. I used to talk for a living so speaking well again is VERY important. The purpose of this speech was to deliver a 8-10 sales presentation that used COMPLEX mulit-sylabic words - like Long-term dis-a-bil-i-ty in-sur-ance. 10 syllables!! Whew! Getting there. (We use these Utube videos to help me practice my speech at the UW and also to track my progress with my threapist/insurance providers etc. UTube rocks! 🙂
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Ataxia Long Term Disability.MOD - Dysarthria speaker gives Long Term Disability Toastmaster speech - Video
One night last November, players on the University of Portland men's and women's basketball teams joined forces to compete in one of the toughest games of their lives.
What the students lost by in points that night, they gained in perspective: They got to see a glimmer of what life is like each day for their classmate and friend Sam Bridgman.
Bridgman, a junior finance major, has a condition called Friedreich's ataxia, a rare, degenerative neuro-muscular disorder that causes progressive loss of coordination and muscle strength.
About 550 people attended the event, which raised more than $7,000 toward research for Friedreich's ataxia and offered Bridgman the opportunity to educate his classmates about his condition.
It also gave Bridgman's classmates on the campus of about 3,810 students the chance to show him what he means to them.
"Although SamJam is a more formal event, it just shows what goes on every day with him -- how we all feel about him and that we just want to help him out," says Sam Westendorf, a member of the school's Student Athlete Advisory Committee who helped organize the event.
Bridgman, a Seattle native, grew up a happy, outgoing kid who loved people and baseball -- and pretty much every other sport. His mother, Amy Koepnick, recalls how her son could make 3-pointers from the age of 7.
But his body first began behaving strangely when Bridgman was playing basketball in middle school.
"When I would rebound the ball I would box out, see the ball come off the rim, and I would tell my body to go get it, but it wouldn't move," he recalls while eating lunch on campus in the company of two close baseball buddies and his girlfriend, Molly Billingham.
Bridgman's symptoms were gradual and easy to dismiss as growing pains. It took years for a diagnosis because the condition is so rare. It wasn't until he was 15 that a pediatric neurologist in Seattle finally put a name to his body's inexplicable rebellion.
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Sam Bridgman: The University of Portland comes together to help support one of its own
26-04-2011 14:50 I uploaded this video to help other parents identify symptoms of this rare disease. Many health professionals are not aware of this disease, so it is very often misdiagnosed. This Video shows the Opsoclonus. My Daughter was diagnosed with OMS in Feb 2011. People need to know about this as it very often misdiagnosed. OMS is very rare affecting 1 in 10 million and is associated with a cancer called Neuroblastoma. Her symptoms started Dec 23, 2010 and got worse Christmas day. She was very unbalanced and just could not walk straight. We went to our local hospital were multiple tests were done. Everything came back fine except and MRI showed she had a sinus infection. We were sent home with antibiotics and told that her symptoms were being caused by a virus and would clear up on it's own. Weeks went by and she only got worse, Her speech was slurred and her eyes were moving involuntarily. She forgot about trying to walk and started to crawl. Then it got to the point where she couldn't even crawl without hitting her head on the floor. She didn't even want to try anymore. All she wanted to do was lay in front of the TV and watch her favorite shows. We were told by her pediatrician and eye dr. to go to the emergency at Children's Hospital of WI where she was finally diagnosed with OMS. Full body MRI and MIBG scans were done to detect the neuroblastoma tumor but none where found. Thankfully. From there, we saw Dr. Pranzatelli and Elizabeth Tate in Springfield, IL. He is considered the ...
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Opsoclonus Myoclonus Ataxia - Video
Sonia Gobeil can trace her ancestors to the pioneers who first settled the isolated Saguenay region northeast of Quebec City, but she had never heard of the devastating brain disease they passed on through their genes until her son was diagnosed with it.
The disease, an inherited form of ataxia, affects the part of the brain that co-ordinates movement. It can skip generations and miss entire branches of family trees, only to pop up according to the laws of genetics and chance, leaving most patients in a wheelchair by the time they are 40. It is more common in the Saguenay and Charlevoix regions of Quebec than anywhere else in the world.
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The history of the disease there begins with a small population of immigrants from France who first settled the Charlevoix region in the 17th century. Researchers suspect that several of those people carried a copy of a rare genetic mutation that on its own is benign, but can wreak havoc in the brains of those unlucky enough to inherit two copies – one from each parent.
The population grew and, 100 years later, the migrants pushed the government to open the territory around the Saguenay River for settlement. There, they carved out a society in the forested wilderness, largely cut off from the rest of the province and generating their own distinctive genetic map. For generations, families were large – 11 children a household on average in the early 1900s – and marriages outside the Catholic faith were discouraged by the church. The Saguenay also got few newcomers. The first passable road to Quebec City, 200 kilometres away, was opened in 1951.
Today, the Saguenay remains strikingly homogeneous: 98 per cent of its 273,000 residents are francophone Quebeckers, and immigrants make up less than 1 per cent of the population.
The remoteness has produced a form of proud self-reliance, a trait that’s now being put to the service of probing the region’s genetic history and dealing with its legacy. In addition to autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS), which Ms. Gobeil’s two sons have, three other genetic diseases are much more common in the region than elsewhere in the world. One causes a buildup of lactic acid in blood and can be deadly; another is an enzyme deficiency that can lead to liver and kidney failure. The third causes a birth defect in which the structure that connects the two hemispheres of the brain is missing or only partially formed. Since 2010, couples have had access to free genetic screening. About 1,800 people have been screened so far for the diseases, which affect one in five in the region. A local group goes into elementary and high schools to teach children about hereditary diseases, using simple devices like beaded necklaces to explain DNA and genetics.
Ms. Gobeil’s first born, François, was three when his pre-school teachers noticed that his gait was awkward when he ran. She and husband Jean Groleau didn’t think the problem was serious. They were shocked when doctors diagnosed the boy, now nine, with ARSACS. Their second son, Laurent, who is now six, also has the disease. François can’t skate or play hockey, which he loves. Both boys have a stiff left leg.
After François was diagnosed, the couple learned there was no treatment and no research under way to find one.
“Knowing there was no research being done was like a punch in the stomach. But at the same time, we saw it as an open door.” The condition is hereditary; we can’t change that they have it. But with research, we can do something about it and try to change the path of the future,” said Ms. Gobeil, a lawyer in Montreal.
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In Saguenay, a family takes on a disease that haunts the region
19-11-2009 04:23 WARNING: Have a box of tissue and a trashcan near bye. This is a video of Brycen on Tuesday 11/17. He started feeling like this suddenly on Sat. 11/14 @ 6:30 am when he woke up mommy. She found him lying on the floor crying and unable to stand with her help. After X-Rays, CT, MRI, Blood Work the doctors think it is most likely a cause of the H1N1 nasal vaccine that he received on11/3. This is the cause of acute ataxia on the cerebelum.
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H1N1 Vaccine (Nasal Mist): Ataxia Side Effects - Video
16-09-2011 06:32 Raising awareness of ataxia and Ataxia UK. Filmed and edited by Cosmo Cardozo. Part of International Ataxia Awareness Day (IAAD). Visit http://www.ataxia.org.uk and http://www.ataxiaawareness.org for more information
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Working with Ataxia - Video
28-08-2010 21:02 DOWNLOAD: http://www.mediafire.com BE SURE TO PICK UP THE REAL THING ON AUGUST 31
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Within The Ruins - Ataxia (BEST QUALITY W/DOWNLOAD LINK) - Video
30-12-2009 06:56 Joseph Pomykal is 23 years, suffers from Friedreichs Ataxia and is from the USA Joseph got treated in February 2009, he got 4 times NSC/MSC lumbar puncture.
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Jospeh, Friedreich's Ataxia, physical therapy after stem cell treatment - Video
15-06-2011 09:58 "Army Wives" actor Jeremy Davidson (Chase Moran) and his fellow cast members share their passion for educating others on Freidrich's Ataxia (a rare neuromuscular disease) and the ongoing work of the Freidrich's Ataxia Research Alliance (FARA). Learn more at cureFA.org.
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Jeremy Davidson on the Freidrich's Ataxia Research Alliance - Video
20-05-2011 18:22 Fighting Friedreich's Ataxia
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Fighting Friedreich's Ataxia - Video