Dr. Brian Shirts appreciated BBI's funding starting in 2019 to launch ConnectMyVariant, which has now become a non-profit organization.
By BBI Communications
ConnectMyVariant, the BBI-funded program serving individuals and families with hereditary cancer, has become a non-profit organization enabling it to expand in the United States and internationally.
Launched in 2019 as a research project, the program educates people with hereditary cancer to understand their own inherited genetic mutations, as well as to find and communicate with relatives with the same genetic risks of cancer.
This education and communication enable outreach to families and targeted genetics testing, a necessary step for optimal cancer prevention services through treatment or surgery.
As awareness of ConnectMyVariant as a public health service expanded beyond the Puget Sound region, it became increasingly evident to President Dr. Brian Shirts that its association with the University of Washington had to be severed to fulfill its mission.
“Even though our mission to end hereditary cancer is aligned with BBI and the UW, the university is not set up to do patient education on national or international level,” said Shirts, an associate professor of Laboratory Medicine and Pathology at UW Medicine. “Our pilot research at the UW demonstrated that our family outreach strategy enhances patient experience, is considered ethical, and is embraced by newly identified relatives. Our work is 25 to 50 times more effective than traditional cancer prevention education interventions that target the general population.”
Thus, began an administrative journey of several months that concluded January 24 when the U.S. Internal Revenue Service informed Shirts that his application to make ConnectMyVariant a 501-c-3 non-profit organization had been approved.
“This enables us to collaborate with other health care organizations and systems in the US and globally,” he said. “And we will be able to work more easily with individuals and families internationally. This opens up, literally, a whole new world of opportunities for ConnectMyVariant.”
'Knowledge is power.... Understanding my family tree has helped me find out which other relatives are at risk, so I can help them get genetic testing.' Mathew Knowles, Music Executive, Author, Entrepreneur, Father of Entertainers Beyoncé and Solange, and ConnectMyVariant Participant
One of those individuals who has benefitted from ConnectMyVariant is known internationally: Mathew Knowles, whose titles include author, professor, music executive, entrepreneur, and cancer survivor. He is also the father of entertainers Beyoncé and Solange. In a personal essay for the ConnectMyVariant website, Knowles, who announced in 2019 that he had a BRCA2 variant and was treated for chest cancer or male breast cancer, urges people to understand and act on their genetic cancer risks.
“Let’s face it: Knowledge is power,” Knowles writes. “Most people find out they have an inherited mutation only after they are diagnosed with cancer. Understanding my family tree has helped me find out which other relatives are at risk, so I can help them get genetic testing. So, can yours.”
Enabling others to fulfill Knowles’s admonition, ConnectMyVariant uses its growing variant database and hosts online community engagement events so participants can share experiences, find common ancestors, and help others receive medical care. ConnectMyVariant also works to increase awareness of the benefits of family outreach among physicians, as well as others who provide prevention care and the broader genealogy community. Its activities include:
- Working with patients to implement personalized family outreach plans;
- Training patients to talk to relatives about inherited cancer risk;
- Encouraging variant-specific family reunions to share prevention stories and plan outreach to relatives;
- Offering genealogy assistance to help connect individuals in variant groups; and
- Seeking and training volunteer family outreach navigators.
More than 500 people currently are registered with ConnectMyVariant and many of them have identified their genetic cancer risks because of the family outreach the organization encourages.
'This represents the next generation of cancer prevention providers.' Dr. Brian Shirts
So, what’s next for ConnectMyVariant?
“With our legal and administrative structures in place, our next efforts will include fundraising, especially connecting with government agencies, private foundations, and individual philanthropists,” Shirts said. “And with additional resources, we will be able to expand our reach within and beyond the countries where we currently have participants – the US, Canada, Mexico, and Australia.”
Shirts also sees the mission of ConnectMyVariant as an integral component of precision medicine. He said many pre-med and pre-genetic counseling students are interested in the organization.
“We are providing students opportunities to learn vital family outreach skills, which are often overlooked by our health care system,” he said. “This represents the next generation of cancer prevention providers.”