Latest news with #Fibrosis
Hamilton Spectator
26-06-2025
- Health
- Hamilton Spectator
Alexandria's B&B Market barbeque for Cystic Fibrosis
The community came out to support the second annual fundraising barbeque to help those living with Cystic Fibrosis (CF) experience better lives. B&B Market hosted the barbeque providing their own prepared tasty burgers and hotdogs, cooked on the grill by Raymond Deschamps, along with all the condiments and fresh cut tomatoes, onions & pickles. Drinks, chips and even cups of poutine were supplied at the free-will barbeque. Due to another upcoming weekend of expected rain, the team decided to switch from a Saturday to a Friday lunch event, but this opened opportunity for work crews and others going through Alexandria to stop in for a tasty lunch. Burgers and hot dogs are always better than a cold sandwich. Carole Brunet and her husband Denis, owners of B&B Market, began the initiative to raise funds for cystic fibrosis because one of their employees has a child who suffers from the disease. Cystic fibrosis is caused by a mutation in the normal functioning of the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR), which aids in balancing salt and water on many body surfaces. CF leads to a buildup of mucus in the lungs that obstructs airways and makes breathing difficult. As well, CF can lead to increasing risk of infections and can affect organs such as the pancreas and liver. Carole Brunet said that Alexandria is a wonderful community with residents who always find a way to help, and this year's barbeque proved the same. Lorna Massia was making sure all hot dogs and hamburgers were matched with their respective buns. Runners were bringing additional hamburgers to Raymond for cooking, and Carole made sure the condiment table was kept full. Neighbour Pierre Lauzon lent tables and chairs for people to sit down to enjoy their food and Christine Borris was accepting the free-will donations. Christine's daughter Aspen, who is six years old, also has CF, making this event very meaningful to Christine and her family. In 2024, at the first barbeque, over $1800 was raised, with the B&B team serving about 300 people in a three-hour span. This year, there were many people stopping by to enjoy lunch and offering donations, and Carole said that people continued to drop in at B&B Market on the weekend to make donations, even though they were unable to attend the barbeque. The fundraiser proved to be another successful event, with the most recent total at $2420. Error! Sorry, there was an error processing your request. There was a problem with the recaptcha. Please try again. You may unsubscribe at any time. By signing up, you agree to our terms of use and privacy policy . This site is protected by reCAPTCHA and the Google privacy policy and terms of service apply. Want more of the latest from us? Sign up for more at our newsletter page .
NZ Herald
02-05-2025
- Health
- NZ Herald
On The Up: 24-year-old Aucklander with cystic fibrosis running 12 marathons in 12 months to raise $25k
'In the later teen years is when I felt it the most, just basic day-to-day life, things getting a bit tricky,' Prince-Saxon explains. 'Less energy, no longer keeping up with my mates on the football pitch and just a lot of coughing.' Those symptoms led him to experience 'a lot of social anxiety' as well, he says. 'I [didn't have] a lot of confidence meeting new people.' Two years ago, Prince-Saxon started taking Trikafta, which was first funded for cystic fibrosis patients in New Zealand in April 2023. 'It changed everything,' he says. 'I started it on a Friday and then over the weekend, it was just my body clearing out all the mucus that was built up in my lungs that wasn't able to be cleared. 'Since then, it's been easier to gain weight, I'm coughing a lot less – before Trikafta, I would have been coughing maybe like every five to six words in a sentence, but now I'm barely coughing at all.' While his lung function hasn't improved to the level he would like, he can now breathe properly through his nose, unlike before. 'I just have a lot more energy to run, to do everything in life that a 'normal person' would be able to do,' he says. It hasn't just given him relief from his symptoms, but a future to look forward to. 'Pre-Trikafta, my life expectancy was about mid-thirties, more or less,' he says. 'Trikafta is estimated to give people with CF an extra 27-plus years of life on top of their mid-30s, which is incredible. 'My outlook on life has definitely changed a lot, just kind of knowing that there's roughly double the amount of time I thought I was going to be here for.' Prince-Saxon started running in January 2023 before starting the drug, in the hope it would help his body to benefit from the treatment. In the years since then, running has come to mean a lot more to the 24-year-old. Advertise with NZME. 'It's one thing I've just really wanted to push myself into, not having been able to run like I can now before Trikafta, and just wanting to push the limits of the new life that I've been given.' Now, he's using it as a way to give back. Last year, he ran three half-marathons and three full marathons, and as he approached his final run in October, he decided to take on a new challenge in 2025 to fundraise for Cystic Fibrosis New Zealand. 'Somehow, 12 marathons in 12 months clicked, and then that's the idea I ran with straight away.' He's since completed four marathons and raised $5,300 through a Givealittle page. 'So far, so good,' he says. 'The reception from all my friends and family was pretty cool and fundraising took off pretty well. In the past two months, it's slowed down a little bit ... [that's] the tricky part in trying to learn what to do differently.' Four marathons into his challenge, he says he's physically coping so far. 'I did the fourth one at the beginning of this month [April] and that was tough. That was definitely the toughest marathon yet, because I ended up doing about three in six weeks from February to April.' Asked how it feels to see how many people have donated to his Givealittle page so far, Prince-Saxon says: 'It means just about the world.' 'Cystic Fibrosis New Zealand [CFNZ] is a charity that gives back to the CF community, so my 'why' for choosing them is they have helped me since I was diagnosed, and my family, with positive things like sports gear and whatnot. 'All the money fundraised goes to CFNZ and then essentially goes back to the community and events to help generate further awareness for CF and help other kids and families and adults with CF throughout New Zealand.' What is cystic fibrosis? Cystic fibrosis is a life-threatening genetic condition that causes the lungs and digestive system to be blocked with thick mucus, which can cause chronic coughing, infections or weight problems. The severity will vary from person to person; some will have fewer symptoms than others. In New Zealand, most people are screened for CF as babies. There is no cure, though there are treatments available. The average life expectancy for people with CF is believed by specialists to be in the mid to late 30s, according to Cystic Fibrosis New Zealand. The drug Trikafta, which has been hailed as life-changing, was funded by Pharmac in 2023 for Kiwis with CF aged 6 and over who meet certain criteria.
