A new fitness competition held its first contest this April in Sunderland. A contest based around individual functional fitness, First Means Everything donated a percent of its sign-up fees to help combat Batten disease. Keep reading to learn more, and follow the original source here for additional details.
First Means Everything is new on the Sunderland Scene. This April marked its first event. The event aimed to be accessible to all ages. The contest welcomed everyone form teens to veterans to compete. As much as the event served as a competition it also set its sights on philanthropy. Ten percent of every qualifier sign-up fee went to the Nicole Rich Foundation.
The Nicole Rich Foundation works alongside the Batten Disease Family Association (BDFA) to raise awareness of Batten disease, which is an extremely rare genetic life limiting illness. As well as raising awareness, they fundraise to help medical research for the most common form of Batten disease, CLN2. Last year, The Nicole Rich Foundation raised an incredible £19,000 last year for the BDFA which went into a research project for gene therapy for the eye, as unfortunately Batten disease takes away the child’s eyesight.
Batten disease is an inherited, fatal disease. There are 14 known types. It often develops during childhood. Batten Disease occurs in roughly two to four births in every 100,000. It is linked to substances known as lipopigments and their buildup within the body. As lipopigments accumulate they kill neurons in the brain, retina, and central nervous system. People with Batten Disease often only live into their late teens or twenties. Click here to learn more about Batten disease.
Jon McManus is the co-founder of Team Strongness, a group of people across the UK who support good causes by taking on extreme fitness challenges to raise money for their chosen charity. For the second year running, they are supporting The Nicole Rich Foundation. Jon points out that England’s National Health Service (NHS) doesn’t fund Batten disease treatment for cost-related reasons.
All treatment in England at the moment comes through National Institute for Health and Care Excellence (NICE). NICE says it will continue to work with the NHS to make the treatment available. This is something that Gail and Matthew Rich from the Nicole Rich Foundation are working alongside the BDFA for, in order to secure treatment for all children diagnosed with CLN2 type Batten Disease in the country.
Johnathan Steele and Stephen Brewis, a University of Sunderland graduate, worked together with The Nicole Rich Foundation to organize the April competition. Based on the turn out and support, they plan to host further events together in the future. The team says this first event was to test the waters. Now that they’ve seen how it can succeed, they have “…big plans to hold this again…”
Team Strongness had a stand at the event selling their clothing range including the ‘dedication range’ designed especially for Nicole and Jessica. 100% of their profits go to the charity.
Asked why they chose to create First Means Everything, the co-organizers explained that they wanted to give athletes a better experience. Many fitness contests are centered around making money, and they wanted to provide something greater.
