Last weekend the Victoria P2P Network hosted an amazing event that got kids and parents out in a canoe for the first time ever! Power To Be rigged up some awesome adaptive equipment to get those with intense needs out on the water and a great time was had by all!
400,000 strong Vaisakhi celebrations in Surrey, BC
Bill, Rani and Manroop Toor invited the Rare Disease Foundation to help them host a hospitality tent on the Vaisakhi parade route in Surrey, BC on Saturday, April 22 amongst 400,000 revellers. It was a big success and we'll be back in 2018 with a bigger and better experience.
Eighth Annual Rare Finds YVR!
A huge thank you and shout out to all the wonderful chefs, mixologists and brewmasters who gave of their time and craft on April 8, 2017 to make Rare Finds Vancouver a heartwarming success. Over 180 guests were welcomed to the Sheraton Wall Centre in downtown Vancouver to experience a night of rare cocktails, creative amuse bouche and interesting, eclectic, entertainment. Thank you to all our guests who showed the many rare disease people and parents in attendance just how much Vancouver cares for rare! Over $111,000 was raised this year, beating last year's total, with much of it already earmarked to go out to researchers eager to solve problems for today's patients in just 4 weeks' time. You can't get a more immediate impact than that!
Let's All Celebrate! Bill S-201 Passed in the House of Commons!
On Wednesday, March 8 Bill S-201, the Genetic Non-discrimination Act PASSED 3rd reading in the House of Commons!
Canadians became closer to being able to make informed decisions about genetic tests without fear. Bill S-201 passed the 3rd reading in the House of Commons. The Bill still needs to go back to the Senate but all indications are that it will be supported. After several attempts by the Liberal Justice Minister to gut the Bill through amendments, it passed in its entirety. The Bill includes Pan-Canada legislation that makes it a criminal act to discriminate against a person based on their genetic test information, as well as amendments to the Canada Labour Code and amendments to the Canadian Human Rights Act. The bill passed by a free vote (in which MPs are allowed to vote according to their own personal conscience rather than according to an official party line) with an overwhelming majority of 222-60.This is a historic development, as Canada is the only G8 country without this type of legislation.
Manitoba Proclaims International Rare Disease Day
The Province of Manitoba has become the 1st Canadian Province to officially recognize International Rare Disease Day. Our thanks to Debbie Dutka and her team of volunteers in Winnipeg for making this happen. Well done!
The Rare Disease Foundation is excited to be hosting and partnering with a variety of organizations across Canada to bring Rare Disease Day events across the country. The theme of this year's International Rare Disease Day is 'Research' and we couldn't be more on board with the theme!
Thanks to Shire Canada, the Rare Disease Foundation was once again able to sponsor and support a variety of celebratory activities in multiple cities across the country. We also want to thank our National Coordinator (and volunteer) Allison Jones of North Vancouver, BC for all her assistance and commitment.
Victoria, BC - We also wish to thank the Township of Esquimalt for recognizing Rare Disease Day with an official flag raising and proclamation.
New Discovery Provides Hope for 20% of Our Community
Novel discoveries funded by the Rare Disease Foundation and recently published in the journal Nucleic Acids Research appear poised to lead to potential new therapies to treat patients across a broad array of genetic diseases.
There are over 7,000 rare genetic diseases that affect about one in twelve people or over 500 million globally. For about 20% of these people, the gene defect arises from a specific type of abnormality known as nonsense mutation; so as opposed to tackling the daunting task of developing unique therapies for each individual disease, a new therapeutic approach targeted at this mutation (and therefore multiple genetic disorders) is being developed by Dr. Michel Roberge, a Professor of Biochemistry and Molecular Biology in the University of British Columbia’s Faculty of Medicine in partnership with The Centre for Drug Research and Development (CDRD), Canada’s national drug development and commercialization centre.
Starting with a microgrant from the Rare Disease Foundation, Dr. Roberge set out to find new therapeutic solutions that are much safer for patients. His team, alongside that of CDRD, screened more than 200,000 chemical-compounds and discovered a number of novel molecules that when combined with lower, less toxic doses of aminoglycosidesenhance suppression of the premature stop signals. Subsequent modification of these compounds by CDRD’s medicinal chemistry group resulted in novel molecules that open up the possibility of treating patients across a broader spectrum of genetic diseases caused by nonsense mutations. The Rare Disease Foundation is proud to have been Dr. Roberge's first funding partner for this potentially ground-breaking research. Read more in the rotating news announcements below.
This beautiful book is touching sweet little hearts everywhere! Author/illustrator Deborah Katz is being incredibly generous and donating book proceeds to the Rare Disease Foundation. Get your copy now! Amazon.caAmazon.com