About CF GET LOUD
WHO WE ARE
We are Canadian CF patients fighting for CF patients.
CF Get Loud has quickly become Canada’s largest CF grassroots movement as we fight for access to Trikafta and other available modulators.
Our executive team is comprised of 3 CF patient advocates and a CF parent. Thousands of patients, their families and supporters have joined the movement and are working hard each day to make change. We are volunteering our time, talents and efforts to help CF patients gain access to Trikafta.
WHAT WE DO
EMPOWER
The CF GET LOUD team will arm you with the tools you need to stand up for cystic fibrosis patients. As a patient led movement, we know your struggle. We see how far we have come as a community and we will not take no for an answer. The breakthrough medicine that so many of us have dreamed of is JUST out of reach. Together, we will make positive change in Canada.
EDUCATE
We work relentlessly to understand the evolving political and regulatory barriers that are needlessly blocking access to life-saving medication for cystic fibrosis patients.
From coast to coast, Canadian families have participated in or signed up to observe live Webinars and Town Halls. We have also completed video campaigns to inform Canadians about our goal of getting Trikafta to every Canadian with CF who needs it.
We target our learning materials to all members of the CF community. We even have a Junior Advocate Program for our young members. You are never too young to stand up for what you believe in.
ELEVATE
We ELEVATE patient voices. Now is the time for new and seasoned advocates to GET LOUD for cystic fibrosis. We need every Canadian’s voice in this fight. We are here to help you share your message.
Our movement of over 4000 members has a powerful loud voice in Canada. We will share the hard work of the CF families and supporters across our network and get your message heard.
THE TEAM
Jacob Jaramillo
Director, Founder
Jacob is passionate about making a difference. He lives with CF and is dedicated to making an impact in all areas regarding CF advocacy and other efforts in the rare disease space beyond CF. He has exercised his genuine inclination to be of service to others in his experience as a chef in the hospitality industry and later in his role as a financial advisor, addressing different type of needs on very different spectrums. Advocacy work has allowed him to change his relationship with CF and empowered him to fight back. He is an all-or-nothing type of person, which resulted in co-founding CF Get Loud. Radically transparency is his modus operandi.
Stephanie Stavros
Director, Founder
Stephanie’s passion for advocacy saved her life. After 36 years of battling CF, her health began to decline rapidly and she was being evaluated for a double lung transplant. Using her professional background in design & marketing, Stephanie campaigned and ‘got loud’ to save her life. Stephanie rallied mothers across Canada to join her fight while her story gained traction in the media. In January 2020, Stephanie got a second chance at life; she was the first Canadian to be prescribed Trikafta under the SAP program. Her life was saved and together with friends, she vowed to never give up the fight.
Mathew Van Camp
Founder
Mathew’s advocacy began in the earlier days of genetic modulators, when Kalydeco was first submitted to Health Canada. Seeing the lack of progress being made by our government in providing access, he started a simple Facebook group called “Canadian’s for Kalydeco,” where patients and advocates could share information and talk with eachother. Eventually more modulators would meet the same struggle in access, and when whispers of Trikafta began, Mathew fortunately found other advocates who felt as strongly as himself and worked together to create a more robust and powerful group.