Ataxic Dysarthria speaker give Toastmaster Speech 4 w/minimal reading or notes

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I got ataxic dysarthria with a cerebellar AVM/ stroke last year and am relearning to talk via toastmasters and going to the UW Speech clinic, where I do speech therapy and the Lee Silverman Voice Training method of relearning to talk. This speech was a small triumph as I barely used my notes. The video is hard to understand because the mike on the camera was screwy, and hey, I still talk to fast

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Ataxic Dysarthria speaker give Toastmaster Speech 4 w/minimal reading or notes

Rare disease treatment hope

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Queensland scientists have moved a step closer to new treatments for a rare degenerative brain disease.

Ataxia telangiectasia is an inherited disease causing severe disability, a weakened immune system, susceptibility to infection and an increased risk of cancer.

It affects between one in 100,000 and one in 300,000 people and is ultimately fatal.

Patients are frequently confined to a wheelchair by their early teenage years and generally die by their 20s.

People with the disease can develop cancer and brain degeneration because a gene that recognises and repairs DNA damage is defective.

Researchers from the University of Queensland's Australian Institute for Bioengineering and Nanotechnology have found a way to develop brain cells to study in the lab from the skin cells of children.

By reprogramming the skin cells into stem cells, then brain cells, researchers hope to be able to correct the genetic mutations and demonstrate that they can replace the defective cells that cause the problems in the disease.

Replacing the defective cells with corrected cells, or developing new drugs using the cells in the study, could help treat the disease.

The researchers could start screening medicines in one to two years, but testing in animals would have to be completed before they could be used in humans.

The skin cell reprogramming research has been published in the journal Stem Cells Translational Medicine.

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Rare disease treatment hope

Denton bike riders aim to beat rare disease

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by DEBBIE DENMON

WFAA

Posted on March 24, 2012 at 10:04 PM

Updated yesterday at 8:57 AM

DENTON Earlier this week, we introduced you to Natalie Newman, a 13-year-old girl with a rare disease.

She's hoping to beat the odds, and her dream is inspiring hundreds of other people many of whom hit the road Saturday in Denton.

The Ride for Ataxia is a rare race for a rare disease; only the second bike ride of its kind in Texas to raise money and offer education about Friedreich's ataxia, or FA.

"It affects balance and coordination," explained Kyle Bryant. "It is the reason I'm in a trike. I've been using a wheelchair full-time for about two years now, and my symptoms onset when I was 17 years old."

Bryant is beating the odds by living past the age of 30. Many with FA die in their 20s due to heart complications caused by the neuromuscular disorder.

Natalie Newman has also experienced severe side effects, but she is inspired by Kyle and the race. "Hopefully I finish it this time," she said.

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Denton bike riders aim to beat rare disease

Veterinary Q&A: Outdoor plants and your pets

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Lilies are highly toxic to cats. It is safest to avoid all lilies -- both as cut flowers as part of a bouquet or as a garden plant.

Dr. Denise Petryk, an emergency medicine vet and co-owner of the Animal Emergency Clinic / Puget Sound Veterinary Referral Center in Tacoma, answers this week's question.

Answer: Spring in our Pacific Northwest is so beautiful. With a little careful planning, it is very easy to create a pet-safe garden. There are two main factors to consider when putting together our spring plantings:

-- Foxglove (Digitalis purpurea), pictured right -- vomiting, diarrhea, weakness, cardiac failure, death.

-- Japanese Yew (Taxus cuspidata) -- tremors, difficulty breathing, vomiting, seizures, death.

-- Jerusalem cherry (Solanum pseudocapsicum) -- vomiting, seizures, depression, trouble breathing.

-- Lily of the Valley (Convallaria majalis) -- vomiting, heart trouble, disorientation, coma, seizures.

-- Lily (Lilium species) -- kidney failure in cats -- ALL parts of the plant, even in small amounts.

-- Morning Glory (Ipomea sp.) -- vomiting, diarrhea, agitation, tremors, disorientation, ataxia, anorexia.

-- Nightshade (Atropa belladonna) -- drooling, vomiting, diarrhea, depression, slow heart, weakness.

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Veterinary Q&A: Outdoor plants and your pets

Fundraiser helps boy get service dog

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A Grover Beach boy stricken with Friedreichs ataxia will get his service dog as a result of a fundraiser that drew more than 400 people Sunday.

Nine-year-old Lucas Appleton, who suffers from the progressively crippling form of muscular dystrophy, managed to spend five hours at the event at Mongos Saloon, said his godmother, Linda McClure, who organized the barbecue that included a prize drawing, musical performances and a bake sale.

It was a huge success, McClure said. Lucas was so happy and so was his brother (William) and mother, Casandra.

We raised enough to get him a dog, with a small amount left over for a van, and were working on that now, she said.

A trained service dog, which costs $12,000 to $15,000, will help Lucas maintain his balance, turn on lights for him, pick up things hes dropped, help him through the familys narrow bathroom door and just be a companion.

McClure said about 450 people and a host of dogs attended the event that started at 10:30 a.m. and continued until Mongos closed that night.

She noted Lucas had asked to have a golden retriever or black Labrador retriever for a service dog, which might not be possible.

But a golden retriever club heard about his request and showed up with all their dogs.

It was golden retrievers everywhere, she said, adding club members and dogs joined Friends of Grover Beach members to solicit donations outside Mongos on West Grand Avenue.

That brought in about $400 alone, she said, adding one woman walked in and quietly dropped a $500 check into the collection jar.

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Fundraiser helps boy get service dog

Wish granted for Penta student

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ROSSFORD, Ohio (WUPW) - A special wish was granted Wednesday morning for a Penta student. 

Students in the DECA Marketing program have spent the last 3 months holding fundraisers for Make-A-Wish to raise money for their fellow classmate Zac Zies who wants to go to Australia.  Zac suffers from an illness called Friedrich's Ataxia.  Today the students presented a check for $7,752 to help make Zac's dream come true, although Zac could not attend Wednesday's event because he was ill.

"Each year the DECA Penta gets a community service project that we have to work on, this year we picked to work with Make-A-Wish Foundation and we found out one of the kid's that was on the wish list was here at Penta Career Center so we thought what a great opportunity to help someone that went to our school and that we could all relate to he's our friend," said Noelle Vargas, a senior in Penta's Marketing Education Program.

Make-A-Wish is helping plan the trip for Zac this summer.

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More on movement disorders

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THE Malaysian National Movement Disorders Society, Lloyd Tan Parkinson?s Trust Fund and the Negri Sembilan Parkinson?s Society will hold the inaugural ?Cultivate Hope? event from March 2 to 4 at 1Utama shopping centre in Petaling Jaya to raise awareness on Parkinson?s Disease (PD).

The highlight of this event is the launch of Red Tulip ? the official symbol of World Parkinson?s Day ? in Malaysia.

There will be general health screening, free Parkinson?s screening, information on movement disorders (MDs) and their latest treatments.

On March 4, patients are invited to attend a seminar titled Living a Meaningful Life after Parkinson?s delivered by Dr. Chew Nee Kong, and also participate in folding origami tulips as part of a fundraiser.

MDs are abnormal body movements caused by brain disorders such as ataxia, dystonia, Parkinson?s disease and tremor.

MDs are a significant national health burden in Malaysia, as there are 100,000 to 150,000 sufferers ? both young and the elderly.

As there are no cure for MDs, the progressive disease results in life-long physical and mental disabilities.

PD is a chronic, progressive disorder of the nervous system, which causes increasing and devastating disability over time.

It is estimated that there are 50,000 to 60,000 patients in Malaysia.

Health director-general Datuk Seri Dr Hasan Abdul Rahman will be launching the event and the unveiling of the Red Tulip.

For details and registration, contact Habsah (019-335 8872) or Joseph (016-648 4718) or visit http://www.facebook.com/mnmds or http://www.parkinsoninfo.my

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More on movement disorders

ViroPharma to Release 2011 Fourth Quarter and Full Year Financial Results on February 28, 2012

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EXTON, Pa., Feb. 15, 2012 /PRNewswire/ -- ViroPharma Incorporated's (Nasdaq: VPHM - News) fourth quarter and year end financial results for 2011 are expected to be released on Tuesday, February 28, 2012 before the open of the U.S. financial markets.

The company will host a conference call and live audio webcast at 9:00 a.m. Eastern Time on the same day.  During the conference call, ViroPharma management will discuss the 2011 fourth quarter and full year financial results and other business.

The press release and the live webcast of the conference call will be accessible via ViroPharma's corporate website at http://www.viropharma.com.  An audio archive will be available at the same address until March 16, 2012.  To participate in the conference call, please dial (800) 874-4559 (domestic) and (302) 607-2019 (international).  After placing the call, please tell the operator you wish to join the ViroPharma investor conference call. 

About ViroPharma Incorporated

ViroPharma Incorporated is an international biopharmaceutical company committed to developing and commercializing novel solutions for physician specialists to address unmet medical needs of patients living with diseases that have few if any clinical therapeutic options.  ViroPharma is developing a portfolio of therapeutics for rare and Orphan diseases including C1 esterase inhibitor deficiency, Friedreich's Ataxia, and adrenal insufficiency; and recurrent C. difficile infection (CDI).  Our goal is to provide rewarding careers to employees, to create new standards of care in the way serious diseases are treated, and to build international partnerships with the patients, advocates, and health care professionals we serve.  ViroPharma's commercial products address diseases including hereditary angioedema (HAE), seizures and C. difficile-associated diarrhea (CDAD); for full U.S. prescribing information on our products, please download the package inserts at http://www.viropharma.com/Products.aspx; the prescribing information for other countries can be found at http://www.viropharma.com. 

ViroPharma routinely posts information, including press releases, which may be important to investors in the investor relations and media sections of our company's web site, http://www.viropharma.com. The company encourages investors to consult these sections for more information on ViroPharma and our business.

 

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ViroPharma to Release 2011 Fourth Quarter and Full Year Financial Results on February 28, 2012

Ataxia Angel : Marguerite Black – Friedreich's Ataxia – Video

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margueriteblack.blogspot.com A peek into the life of Marguerite Black, who suffers from Friedreich's Ataxia, an inherited disease that damages your nervous system. The damage affects your spinal cord and the nerves that control muscle movement in your arms and legs. In severe cases, people become incapacitated

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Ataxia Angel : Marguerite Black - Friedreich's Ataxia - Video