Ellen Wallace
Ellen Wallace
 

GENEVA, SWITZERLAND – It’s not often we tip our hats to guys who are barely covered and only down there, but definitely, hats off to David Beckham for showing us how to run in style. And hat’s off, too, to director Guy Ritchie. This one isn’t just for sports fans, believe me!

And while we’re at it, H&M has done a pretty good job of showing how to have a top-of-the-line ad without top price products.

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Ellen Wallace
Ellen Wallace
 

photo, M-Way

GENEVA, SWITZERLAND – Vélos pour l’Afrique will be sending its 100,00oth recycled bicycle to Africa this week, a point brought to my attention by M-Way, the Migros shop that sells electronic bikes – and that is giving CHF250 discounts to anyone who buys a new e-bike and trades in their old bike. A great way to clean out the garage, get yourself a new bike and help someone in Africa get on the move, affordably.

Note: several other companies in Switzerland are project partners.

M-Way is helping collect bikes for a 14 September shipment to Africa, so if you’re quick you might see yours added to the batch. Bikes are taken in seven location: Geneva, Lausanne, Zurich, Bern Westside, Basel and St Gallen.

M-way has a series of recycled bicycle social projects: 50 percent of those collected in Lausanne go to Lausanne Roule, which repairs them in workshops manned by residents of refugee centres, and the bikes are then made available to asylum seekers as part of efforts to improve integration. In Geneva half of the bikes go to the cooperative Péclot 13, which repairs them and sells them for very low prices. Zurich uses theirs for socioprofessional projects that help people get back into the workplace.

 

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Ellen Wallace
Ellen Wallace
 

I burst out laughing, as you probably will, when I saw the link to this site from a friend on a health care forum. On reflection I  decided it’s one of the most useful things I’ve seen on the Internet in a while. Anyone who has digestive problems, or an aging parent with them, or a small child, eventually ends up trying to describe stools.

I have some uncomfortable memories of trying to describe smells and texture, and I’m not the only one!

It turns out you don’t have to use your imagination to get it right: here’s a chart. Now I’ll stop before I can’t resist making bad jokes about this.

 

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Ellen Wallace
Ellen Wallace
 

Tara loves cars and apples and will go to great lengths to find them

GENEVA, SWITZERLAND – Only 10 minutes left to tell you that a) this is International Day of Persons with Disabilities  (nice way of getting around labeling them handicapped or disabled – writing lesson here!), as the Swiss government reminded me, and b) Scientific American has a good article, “The hidden potential of autistic kids”.

Nothing spectacularly new in the article, and no, it isn’t about savants, those amazingly remarkable autistic people who make up only a tiny fraction of all people with autism.

It’s about the rest of us, who are seeing things from the other side of the fence, remaining open: “At the other, ‘low functioning’ side are people who cannot operate on their own. Many of them are diagnosed with mental retardation and have to be kept under constant care. But these diagnoses focus on what autistic people cannot do. Now a growing number of scientists are turning that around to look at what autistic people are good at.”

Let me give you a concrete example I shared with an online discussion group, meta-mito-autism on Yahoo, that I belong to, where I was talking about my 19-year-old daughter Tara: “the article caught my eye because we had an interesting experience a week ago. I picked Tara up at the place where she lives during the week, to spend the afternoon with her. I wanted to take a walk before we drove off, but she loves the car so I hid it in a parking lot a 10-minute walk away, where I’ve never gone with her. She does take a lot of walks there, so apparently knows the grounds (big), even though she’s been there just a year. I said I didn’t have the car, but she ignored me and set off in a direction we don’t usually take, then she proceeded to systematically check out each of the parking areas in the place, clearly looking for our car, ignoring cars that looked a bit like it. After 15 minutes she found it and looked at me triumphantly. That took logic, memory, recognition, in brief, orderly thinking. She could do it because it interested her :-) ).”

Good night, another five minutes left to tip your hat at those whose lives are a bit different from yours and mine.

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Ellen Wallace
Ellen Wallace
 

De Caferacer, The Netherlands: green school buses that use push-power are just one variety of group pedal powered vehicles (photo, De Caferacer)

De Cafe Racer from The Netherlands has taken the tandem bike to new heights, or at least lengths and widths, making group-powered bicycles that are used mainly for events.

Now they’re putting kids to work pedalling bikes not just for fun, but to fuel their own “green” school buses. Springwise writes that the buses hold 10 children plus an adult who has the option to add electric power, presumably to avoid slowing down as the children near school and lose power.

A bike-pooling bus clearly makes more sense health-wise than car-pooling.

De Caferacer, in Dutch

(With thanks to Bernino Lind, who pointed me to this)

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Ellen Wallace
Ellen Wallace
 

I don’t usually use this space to point to another of our blogs, but our guest blogger Devashish Paul’s tale of woe from the Ironman Switzerland triathlon event earlier in July deserves a read.

Hats off! to anyone who can crash, end up in hospital with a series of injuries and still write “To those reading, please do consider Ironman Switzerland. The organization is awesome, the course is brilliant and picturesque, there are marshals everywhere, clean racing by other racers (from my vantage point), fabulous medical facilities, and Zurich is very easy to get to/from anywhere in the world with an excellent airport and fabulous public transport when you get there.”

 

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Ellen Wallace
Ellen Wallace
 

South AfricanKwaito star Howza sings a tale of diabetes

Here’s the blurb from the official “I choose to live” music video, out 9 November for World Diabetes Day 14 November: “Written and performed by South African Kwaito star, Howza (Tshepo Mosese), the song is about the impact of diabetes on the world and the importance of prevention.

The song, written and performed with fellow South African artist Omen (Sabelo Mzizi) also includes the voices of the Grammy Award winning Soweto Gospel Choir.

First performed in Johannesburg at the Diabetes Leadership Forum Africa 2010, “I choose to live” received such an immense response that global pharmaceutical company, Novo Nordisk decided to support Tshepo in driving his message forward.

The popular singer and actor, who currently presents a local TV programme, was first diagnosed with Type 1 Diabetes in 2003. Since then, he has made it one of his life missions, to increase awareness of this disease at home and across the globe.”

What the blurb doesn’t say is that the song also features the well-known Soweto Gospel Choir, who lost a member to diabetes in 2003.

[youtube]http://www.youtube.com/user/ichoosetolive[/youtube]


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Ellen Wallace
Ellen Wallace
 

No hands, no feet doesn’t stop mountaineer from snowboarding, changing nappies

Jamie Andrew climbing Scotland's Ben Nevis in 2000

[video] Founex, Vaud, Switzerland - Tough things are going to happen to you in this life and you can learn from them. Just don’t give up.

That was the message handed by sports enthusiast Jamie Andrew to the 2010 graduating class at La Chataigneraie, the Founex section of the International School of Geneva. Andrew was the guest commencement speaker. He knows what he is talking about: the 41-year-old Scot lost both feet and both hands after being caught for five days by a bad winter storm while cllimbing the North Face of Les Droites, above Chamonix in the French Alps in 1999. The accident is described in his book, Life and Limb. His best friend and flatmate Jamie Fischer died before a dramatic helicopter rescue.

He bounced back after the accident and dramatic rescue, to carry on with a career in sports and public speaking. He kayaks, paraglides, snowboards, has run the London Marathon and has gone back to mountaineering.

But he told the students at La Chat that the hardest thing he’s ever done is to raise kids. He has three, a six-year-old and four-year-old twins. “Nothing is impossible” is his motto, shared with the students.

[youtube]http://www.youtube.com/watch?v=zdDnbJQVvHE&feature=player_embedded[/youtube]

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Ellen Wallace
Ellen Wallace
 

Update 22:25 Here’s a cheer for Andy Aylen in England, my husband’s nephew by marriage, who is doing a 10-km charity walk acrooss the South Downs 15 May to raise awareness for stroke patients, in particular the 10,000 people a year in the UK who are under age 55 when they have strokes, out of 150,000 total. The walk represents far more than 10km of distance for Andy, who had not just one but three major strokes at age 20, when he was a music- and dance-loving young guy like any other, from South Africa, living in London for a while.

Nine years and a huge investment of energy and determination later, he is still marked by the strokes, but he has every reason to be proud that he’s a loving husband, terrific father to a little boy, and someone who still knows the meaning of fun.

Physically, 10km is a long distance for him to walk. Psychologically, he’s been there and back, and is determined to show others they can get their lives back.

Here’s Andy’s page on Just Giving, raising money for the UK Stroke Association, which provides help to families.

Update: Just a couple hours after publishing this I read in the Los Angeles Times that the 41-year-old son of US Vice-President Joe Biden has had a stroke. Beau Biden, who is the attorney general for the State of Delaware, is in stable condition and resting in hospital in Delaware.

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Ellen Wallace
Ellen Wallace
 

The first Rare Disease Symposium in the US created some interesting conversations about diseases that often go undiagnosed (background, GenevaLunch). It was held by the Sanford-Burnham Institute in California and Florida, one of the top four groups in the US for NIH (National Institutes of Health) funding. You can watch 20-30 minute video presentations on a series of topics:

Bone Disorders

José Luis Millán, Sanford-Burnham Medical Research Institute
Pathogenesis and treatment of Infantile Hypophosphatasia

Yu Yamaguchi, Sanford-Burnham Medical Research Institute
Multiple hereditary exostoses: the power of collaboration between patient advocacy groups and research community to reveal the true scope of the disease

Craig Eaton, MHE Research Foundation, New York
A Day in the Life of an MHE Teenager and the Role of the MHE Research Foundation

Congenital Disorders of Glycosylation

Hudson Freeze, Sanford-Burnham Medical Research Institute
CDG Animal Models and Therapy

Cindy Wren-Gray, CDG Family Network & Monarch
Vision and Balance – A Collaborative Opportunity for Rare Pioneers

Muscle Disorders

Lance Wells, University of Georgia
O-Man: What is functionally important in the Dystroglycanopathies?

Anne Rutkowski, Cure CMD
CMD (Congenital Muscular Dystrophy): From Diagnosis to Translation

Needles and Haystacks

Jeffrey Esko, University of California, San Diego
Resolving Glycosaminoglycan Accumulation in Lysosomal Storage Disorders

Michael Jackson, Sanford-Burnham Medical Research Institute
Screening for Therapeutics to Treat Rare Diseases

Phil Wood, Sanford-Burnham Medical Research Institute
Inborn Errors of Mitochondrial Fatty Acid Oxidation and Synergistic Heterozygosity

Within the Cell

David Pearce, Sanford Childrens Health Research Center, Sioux Falls, SD
Juvenile Batten Disease: Bench to Bedside

Bruce Barshop, University of California, San Diego
Real Treatments for (Real) Rare Diseases

and

Eric Little, CTG Executive Consultant, Buffalo, NY
Using Semantic Technologies for Building User Communities Around Rare Disease: Linking Providers, Researchers and Families

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