The loss of Ottawa's Jonathan Pitre is expected to propel the fight against EB.
Debra Canada works to raise money and awareness in order to support those dealing with the extremely rare and painful blistering skin condition.
Chair of the charity Jay Wilson told Ottawa Today with Mark Sutcliffe, the difference between where their cause stood before and after Pitre's case became public is "night and day."
"In creating awareness, I can't quantify it to be honest with you," he explained. "[Pitre] and Tina [Boileau] did wonders, and with the City of Ottawa and the [Ottawa] Senators embracing Jonathan, it really propelled us as a charity, as a cause, and as an international community for EB sufferers."
Wilson said he will miss Pitre's smile, his courage and his humour the most.
"I really remember him as a caring, sensitive, courageous, brave young man," he added.
Pitre's mother Tina Boileau is Debra Canada's president, and Wilson sees her staying committed to the cause going forward.
"Knowing Tina as well as I do, I think that fire is only going to get stronger," he said. "I would expect some really neat things in the future."
EB affects one in 30,000-50,000 live births in Canada. Debra provides support for up to 180 EB families across the country.
For more on Debra Canada, or to make a donation, click here.
Listen to the full conversation with Debra Canada Chair Jay Wilson: