A rare disease is referred to as an orphan disease because it affects a small percentage of the population, either geographically or worldwide. Cancer is a disease and falls into the orphan disease category. Globally, there is no standard incidence rate for orphan diseases.
In Canada, one in 12 people are affected by a rare or orphan disease... One-third of children with rare diseases die before their fifth birthday, and there is no available treatment for 94% of these rare diseases.
Until recently, orphan diseases received limited or negligible funding for research into their diagnosis and treatment, as opposed to more prevalent diseases.
There is a rise in orphan disease research as a result of patient advocacy, venture capital investment, industry collaboration, medical breakthroughs, and legislative incentives. Many countries have adopted an orphan drug act to clear the drug development path for overlooked, rare diseases.
The Canadian Organization for Rare Disorders (CORD) is Canada's national network for organizations representing those with rare disorders. CORD serves as an advocate for health policy and a supportive healthcare system for those with rare disorders in Canada, and works to ensure Canada's Clinical Trial Registry works effectively for those with rare disorders.
The Alberta Cancer Foundation has made enormous progress in cancer research. They have launched a scientific review panel to examine the science behind research and to measure results. This has a significant impact on orphan cancers, as research on more prominent cancers can also be used to treat orphan cancers.
Regardless of where you live in the world, cancer is a global disease. It affects everyone - from those who are afflicted to family and friends. It is only through your support by way of a donation that a cure can be found.
Take a stand for Together We Pay it Forward. Be part of the cure and JOIN our team!
My name is Frank Symons, and I am the captain of JARRID’s Team. I am also Jarrid Rich's godfather.
This website is the result of Jarrid's family wanting to create a legacy for their son, Jarrid Rich, who passed away from an Orphan Cancer, namely, a rare type of soft tissue sarcoma called malignant peripheral nerve sheath tumor (MPNST). Jarrid left us at the young age of 28 years on March 7, 2013.
Frank Symons (L), Jarrid Rich (R)
The legacy of Jarrid's website serves several purposes:
1. It is a living remembrance for Jarrid's two children, Jaxon and Grace.
2. Continues Jarrid's passion to help others by raising funds for a cure.
3. A platform to raise awareness and research funds for Orphan Cancers.
4. Celebrates the commitment and support of Jarrid's teammates.
5. Inspiration for YOU to join JARRID’s Team.
I want you to join JARRID’s Team and help us to continue Jarrid's legacy, for Together We Pay it Forward.
Whether you are riding to support Orphan Cancers, any other cancer, or want to support the quest for a cure, I welcome riders of any ability to join JARRID’s Team.
The Enbridge Tour Alberta for Cancer is an annual event, and JARRID’s Team participates in the Calgary, Alberta, Canada ride. Your participation and funds raised go to support research, treatment and after care through the Alberta Cancer Foundation.
Please use the contact form only if you need further information concerning the Ride.
Copyright © 2024, JARRID’s Team. All Rights Reserved.
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