Joylab - Raising CID awareness for a mate still in our hearts
Aug 11, 2021
The Cardiac Inherited Diseases Group (CIDG) and Tuatara Brewery have been working together for the past five years to raise awareness about the little-known Cardiac Inherited Disease in memory of a Tuatara team member.
Matthew Lang, an Auckland Regional Sales Rep for Tuatara Brewery, passed away suddenly in his sleep in December 20, 2013, at the age of 27 from Long QT Syndrome (LQTS) - just one type of Cardiac Inherited Disease (CID).
Jon Skinner, Clinical Leader and CIDG Chair, said that when Tuatara approached them wanting to raise funds and awareness by brewing a beer in Matt’s memory, “we suggested proceeds of the sales be donated for the purchase of AEDs (Advisory External Defibrillator), a portable defibrillator for at-risk patients with the same condition as Matt, and go a long way to saving the lives of people with CID.”
Since the initiative began, proceeds for the purchase of 9 AED’s have been provided to CIDG to distribute to children and adults diagnosed with the disease.
“Having met people whose lives have been affected by CID, and those who work tirelessly to help them, our commitment has only strengthened. I recently read an article where St Johns referred to CID’s as NZ’s “Silent Epidemic” claiming so many lives with so little public awareness. So the aim now is to drive more awareness,” said Blair Harley, Matt’s manager.
Sudden cardiac arrest kills more people per year in NZ than die on our roads - 5 people per day and only 9% of them have access to an AED.
Matt loved massively hoppy, Pliny-like pale ales, so each year, close to the anniversary of his death, Tuatara brew the Matt Lang Memorial Brew. 100% of proceeds from the sale of the beer are used to fund further AED’s and distributed by CIDG to children and adults diagnosed with the disease.
This year the initiative has been co-hosted or ‘co-brewed’ with another of Matts employers, Joylab (formerly Barworks), who spearhead some of Auckland’s best known gastrobars. It’s allowed the beer quantity to be doubled, with the hope of increasing the fundraising efforts for this worthy cause.
Joylab’s Sweat Shop Brew Kitchen have wholeheartedly supported this extended reach by hosting the collaboration brew and providing the venue for the Auckland launch.
Additional notes on related events (CID stats following):
• CIDG is a group of New Zealand medical professionals working to prevent CID with ongoing research, by simplifying the screening of at-risk individuals and families, and educating people and health professionals around awareness of CID.
• On Friday 30 November, there is a Family and Friends event held at Auckland Hospital where Tuatara will hand over AED’s purchased from last years initiative. There will also be research presented and stories shared by those affected. Of relevance will be a presentation about the GoodSam app (now set up for NZ) providing first responders timely information on the closest AED available. Matt Lang’s parents and CIDG representatives will be present to talk with media or are happy to speak to media at a suitable time.
• Alternatively, there will also be similar (lesser) representation at the beers launch later that evening, Sweatshop, 8pm (providing time for these people to travel from hospital to launch event).
• On Wednesday 28 November there will be a Wellington launch from 6pm. The focus is largely on engaging the public to attend and raise funds for the cause. There will be Tuatara staff attending who were impacted by Matts death and CIDG staff. Matt Lang’s parents will not be present but would be happy to speak with media at a suitable time.
• On 31 October, Tuatara Master Brewer and Founder Carl Vasta brewed his memorial IPA recipe with Head Brewer Paddy Molloy, Matt’s father, Bruce, who has attended every brew day, as has a representative from CIDG, this year Jackie Crawford (National Co-Ordinator) attended.
• The Matt Lang Memorial IPA will be available at Sweatshop Brew Kitchen, The Flying Moa and The Merchant, My Bar and Brewers Coop (Auckland) and Tuatara’s Third Eye taproom in Wellingtons CBD, the Kapiti brewery tap room, LBQ, Binn 44 (Wellington).
The impact of CID in NZ:
• The national registry for inherited heart conditions and sudden unexplained death has more than 3,600 registrants across New Zealand. About 120 were registered because someone suffered a cardiac arrest and survived for us to help investigate them and screen their families.
• CIDG have been referred more than 1000 sudden unexplained deaths for investigation. The vast majority are under 40 years of age.
• CIDG are seeing about 70-90 new cases sudden unexplained death cases per year.
• CIDG have 450 families being screened or investigated for long QT syndrome, 585 for hypertrophic cardiomyopathy, 119 for dilated cardiomyopathy.
For more on CID and the CIDG: http://www.cidg.org.nz