Catch the Cure on Feb. 13
International Angelman Day takes place on February 15 and Minden Hills celebrates IAD on Feb. 13 with a party hosted by service clubs teachers businesses organizations individuals the town neighbouring towns and two tired moms.
The town goes all out – with a huge silent auction a day full of events that are by donation for anyone strapped for cash and a complete community effort to understand the need for inclusion celebrate all kids on Family Day weekend and understand better the lives of those who live with Angelman Syndrome (AS). The event has raised $34000 for AS research in two years.
Never heard of AS? Don’t worry – neither have most doctors. Angelman Syndrome is a rare neurogenetic disorder that affects one in about 150000 people. The more people – including doctors and families with undiagnosed or misdiagnosed kids – hear about AS the less rare it becomes. Symptoms include: very difficult to treat seizures developmental delay sleep disorder movement disorder and an inability to talk. Kids with AS are usually exceptionally happy and loving. Scientists are proclaiming that a cure for AS is not just possible butprobable and that this will happen in our lifetime. AS has been cured in the mouse model and two clinical trials are taking place this year – remarkable news for a rare disorder in a world where psoriasis receives more research funding.
2016 is the 51st year anniversary of the recognition and naming of the disorder by Dr. Harry Angelman and February 15th is celebrated as International Angelman Day (IAD) because February is Rare Disease month and the 15th chromosome is affected in AS. There are numerous angles to take with news stories about Angelman Syndrome and the fundraising/awareness efforts happening in Canada for IAD.
The event in Minden was the first of its kind and has inspired Skate-athons across Canada on this same weekend. It has also inspired a spaghetti dinner initiative taking place across the United States. Moms in Minden were instrumental in lighting Niagara Falls blue this year and last year in recognition of IAD.
The events all raise funds for the Foundation for Angelman Syndrome Therapeutics (FAST). In just five years the volunteer-run parent-organized FAST has funded two clinical trials and is funding researchers across the United States to bring a therapy to individuals with AS that hopes to alleviate many major symptoms including the inability to speak. This research is ground breaking and would result in AS being the first neurological disorder to be treated with a viable therapy. It would also open the doors to understanding other diseases and disorders like Fragile X Syndrome and Parkinson’s. We would appreciate any coverage you can offer to help celebrate International Angelman Day and corresponding events or to help raise awareness of Angelman Syndrome to help promote increased early diagnosis intervention and funding for a cure as well as inclusion and understanding of individuals with special needs.