|By PR Newswire||
|January 31, 2014 03:43 PM EST||
PKU uncle will cycle across Canada in 71 days this summer to raise awareness and $25,000
TORONTO, Jan. 31, 2014 /CNW/ - A young father will ride his bicycle more than 7,300 kilometers coast-to-coast this summer to draw attention to a rare, brain-threatening disorder which affects his newborn niece, Avery. The Canadian PKU and Allied Disorders (CanPKU) non-profit association is proud to announce Avery's Ride for PKU. This Ride is the brainchild of Kevin Dube, of Kitchener, Ontario, who learned about PKU when Avery was born and diagnosed in August 2013. This will be the first ride across Canada for PKU.
This exciting event will begin in Victoria, BC on Saturday, June 7th and end in St. John's, NL, on Sunday, August 17th. Mr. Dube will cycle for 71 days through all weather and terrains, determined to make a difference for Avery and all those living with PKU. The route includes every provincial capital and the 16 cities with a PKU-treating clinic. Mr. Dube hopes to raise at least $25,000 for CanPKU.
"My wife and I knew that we needed to do something to support our family," says Kevin Dube. "After talking with CanPKU President John Adams, we decided that a cross-Canada bike ride would be a great way to advocate, raise awareness and fundraise for those families living with PKU."
PKU stands for phenylketonuria and affects about 2,000 Canadians. Untreated, PKU can lead to mental retardation and other neurological problems. It is managed by specialized clinics through a challenging diet by severely restricting the intake of all forms of protein containing phenylalanine ("PHE") and replacing missing nutrients through specially-made medical formulas and foods. Low blood-PHE levels and adherence to this extremely strict diet can be more easily attained in about 50% of patients with the aid of Kuvan, the first medication available to treat PKU approved by Health Canada in 2010. Due to differences in provincial health care, where you live has a direct impact on your ability to manage this disorder. Only three provinces publicly fund Kuvan, with extremely strict criteria reducing access, and several provinces still fail to fund the necessary medical foods and formulas sufficiently, especially for adults. PKU can be so devastating that each province and territory tests every newborn baby for PKU and has done so since the 1960s.
"Kevin has been astute in his short exposure to PKU in realizing that there is a lot of work to be done in this country to ensure that every patient living with PKU has access to all the treatments and clinical care and support they need," says John Adams, CanPKU President and CEO, and father of a young man with PKU. "There is not a single province or territory in this country that does not need to improve PKU funding in some major way."
There are several ways that the public can help this initiative and a full list can be found at http://www.rideforpku.ca/english/how-you-can-help/. CanPKU needs a support vehicle such as an RV or SUV donated for the cross-country tour, and will need a driver or drivers to help ensure Mr. Dube's safety throughout the route. Donations can be made at http://www.corddonate.ca/averysrideforpku. People can offer food and/or accommodation if they are located near one of the stops by emailing CanPKU at [email protected].
"We really hope to see people inspired by Kevin's selfless act," says Nicole Pallone, CanPKU Vice President, and mother of young girl with PKU. "Maybe you are retired and have always wanted to drive across this beautiful country, or maybe you have some travel points or miles that you can cash in for a gas card. However you want to contribute, it will help make this project successful, and in turn help everyone who lives with this devastating disorder."
For more information about the Ride and how you can help, please visit www.rideforpku.ca.
PKU (phenylketonuria) is a rare, inherited, brain-threatening metabolic disorder, rendering the body unable to process phenylalanine ("Phe"), an essential amino acid found in dietary protein. The resulting accumulation of Phe in the blood is toxic to the brain and, if left untreated, symptoms can range from mild cognitive impairment to severe mental retardation. Approximately 1 in 12,000 to 15,000 infants in Canada is born with PKU. All provinces and territories offer newborn screening tests to determine if a child is born with PKU. If PKU is detected, the appropriate, aggressive treatment must be initiated immediately and maintained throughout life to ensure normal brain development.
About Canadian PKU and Allied Disorders Inc.
Canadian PKU and Allied Disorders Inc. is a non‐profit association dedicated to providing accurate news, information and support to families and professionals dealing with PKU and similar, rare, inherited metabolic disorders also detected by newborn screening. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families. For more information, visit www.canpku.org and download our comprehensive resource for patients and families, PKU and the Brain.
SOURCE Canadian PKU and Allied Disorders
"We are an all-flash array storage provider but our focus has been on VM-aware storage specifically for virtualized applications," stated Dhiraj Sehgal of Tintri in this SYS-CON.tv interview at 19th Cloud Expo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
Dec. 5, 2016 03:30 AM EST Reads: 613
"We build IoT infrastructure products - when you have to integrate different devices, different systems and cloud you have to build an application to do that but we eliminate the need to build an application. Our products can integrate any device, any system, any cloud regardless of protocol," explained Peter Jung, Chief Product Officer at Pulzze Systems, in this SYS-CON.tv interview at @ThingsExpo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
Dec. 5, 2016 03:30 AM EST Reads: 919
In his general session at 19th Cloud Expo, Manish Dixit, VP of Product and Engineering at Dice, discussed how Dice leverages data insights and tools to help both tech professionals and recruiters better understand how skills relate to each other and which skills are in high demand using interactive visualizations and salary indicator tools to maximize earning potential. Manish Dixit is VP of Product and Engineering at Dice. As the leader of the Product, Engineering and Data Sciences team at D...
Dec. 5, 2016 01:30 AM EST Reads: 728
It's easy to assume that your app will run on a fast and reliable network. The reality for your app's users, though, is often a slow, unreliable network with spotty coverage. What happens when the network doesn't work, or when the device is in airplane mode? You get unhappy, frustrated users. An offline-first app is an app that works, without error, when there is no network connection. In his session at 18th Cloud Expo, Bradley Holt, a Developer Advocate with IBM Cloud Data Services, discussed...
Dec. 5, 2016 01:00 AM EST Reads: 3,325
Between 2005 and 2020, data volumes will grow by a factor of 300 – enough data to stack CDs from the earth to the moon 162 times. This has come to be known as the ‘big data’ phenomenon. Unfortunately, traditional approaches to handling, storing and analyzing data aren’t adequate at this scale: they’re too costly, slow and physically cumbersome to keep up. Fortunately, in response a new breed of technology has emerged that is cheaper, faster and more scalable. Yet, in meeting these new needs they...
Dec. 5, 2016 12:45 AM EST Reads: 1,804
Data is the fuel that drives the machine learning algorithmic engines and ultimately provides the business value. In his session at 20th Cloud Expo, Ed Featherston, director/senior enterprise architect at Collaborative Consulting, will discuss the key considerations around quality, volume, timeliness, and pedigree that must be dealt with in order to properly fuel that engine.
Dec. 5, 2016 12:45 AM EST Reads: 1,566
In addition to all the benefits, IoT is also bringing new kind of customer experience challenges - cars that unlock themselves, thermostats turning houses into saunas and baby video monitors broadcasting over the internet. This list can only increase because while IoT services should be intuitive and simple to use, the delivery ecosystem is a myriad of potential problems as IoT explodes complexity. So finding a performance issue is like finding the proverbial needle in the haystack.
Dec. 5, 2016 12:30 AM EST Reads: 6,079
When it comes to cloud computing, the ability to turn massive amounts of compute cores on and off on demand sounds attractive to IT staff, who need to manage peaks and valleys in user activity. With cloud bursting, the majority of the data can stay on premises while tapping into compute from public cloud providers, reducing risk and minimizing need to move large files. In his session at 18th Cloud Expo, Scott Jeschonek, Director of Product Management at Avere Systems, discussed the IT and busin...
Dec. 5, 2016 12:15 AM EST Reads: 3,814
According to Forrester Research, every business will become either a digital predator or digital prey by 2020. To avoid demise, organizations must rapidly create new sources of value in their end-to-end customer experiences. True digital predators also must break down information and process silos and extend digital transformation initiatives to empower employees with the digital resources needed to win, serve, and retain customers.
Dec. 5, 2016 12:15 AM EST Reads: 1,158
"We are the public cloud providers. We are currently providing 50% of the resources they need for doing e-commerce business in China and we are hosting about 60% of mobile gaming in China," explained Yi Zheng, CPO and VP of Engineering at CDS Global Cloud, in this SYS-CON.tv interview at 19th Cloud Expo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
Dec. 4, 2016 11:45 PM EST Reads: 917
Fact is, enterprises have significant legacy voice infrastructure that’s costly to replace with pure IP solutions. How can we bring this analog infrastructure into our shiny new cloud applications? There are proven methods to bind both legacy voice applications and traditional PSTN audio into cloud-based applications and services at a carrier scale. Some of the most successful implementations leverage WebRTC, WebSockets, SIP and other open source technologies. In his session at @ThingsExpo, Da...
Dec. 4, 2016 10:45 PM EST Reads: 1,670
"Once customers get a year into their IoT deployments, they start to realize that they may have been shortsighted in the ways they built out their deployment and the key thing I see a lot of people looking at is - how can I take equipment data, pull it back in an IoT solution and show it in a dashboard," stated Dave McCarthy, Director of Products at Bsquare Corporation, in this SYS-CON.tv interview at @ThingsExpo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
Dec. 4, 2016 10:45 PM EST Reads: 1,000
@DevOpsSummit taking place June 6-8, 2017 at Javits Center, New York City, is co-located with the 20th International Cloud Expo and will feature technical sessions from a rock star conference faculty and the leading industry players in the world. @DevOpsSummit at Cloud Expo New York Call for Papers is now open.
Dec. 4, 2016 08:30 PM EST Reads: 1,805
Predictive analytics tools monitor, report, and troubleshoot in order to make proactive decisions about the health, performance, and utilization of storage. Most enterprises combine cloud and on-premise storage, resulting in blended environments of physical, virtual, cloud, and other platforms, which justifies more sophisticated storage analytics. In his session at 18th Cloud Expo, Peter McCallum, Vice President of Datacenter Solutions at FalconStor, discussed using predictive analytics to mon...
Dec. 4, 2016 07:00 PM EST Reads: 4,918
Today we can collect lots and lots of performance data. We build beautiful dashboards and even have fancy query languages to access and transform the data. Still performance data is a secret language only a couple of people understand. The more business becomes digital the more stakeholders are interested in this data including how it relates to business. Some of these people have never used a monitoring tool before. They have a question on their mind like “How is my application doing” but no id...
Dec. 4, 2016 06:30 PM EST Reads: 2,175