In 2012 when Dr. Jon Wolff founded Genetic Support Foundation (GSF) he envisioned the newly formed non-profit organization would provide “unbiased, expert and compassionate care for patients.”
Not only does this year mark the ten year anniversary of our founding but this week in particular marks the somber two year anniversary of Jon’s passing. These occasions have led us to reflect about our beginnings and how we currently carry forward Jon’s mission in the work we do every day.
The past few years have presented unimaginable challenges for many. The uncertainty presented by the pandemic and the isolation that has resulted has touched us all. Thankfully, here at GSF we have been fortunate in many ways. Through Jon’s pioneering and progressive nature and our long-standing use of innovative service delivery models, our ability to meet the needs of our patients and to advocate for best practices in genetics have continued without the large-scale interruptions that many other institutions across the country have struggled to mitigate.
Our pre-pandemic use of telehealth has also afforded us the expertise to assist many of our outside clinical partners (and professional collegues) as they were forced to navigate ways of working that were completely new to them. It has also provided us with the foundation to support each other through many big life events that didn’t stop with the onset of Covid including illness, death of loved ones, and the welcoming of new babies within the GSF family. Through it all, our work to accomplish Jon’s goals for GSF has not missed a beat and remains laser-focused.
The guiding principles of increasing access to genetic counseling for under-served communities and individuals and the education of both patients and health care providers about the best use of genetic technologies formed the cornerstone of Jon’s goals when he outlined in his initial hopes for GSF. As GSF embarks on its second decade and looks to extend our reach, the tenets of access and education remain at our helm.
Due to the continued generosity of the Wolff family and Jon’s many friends, we are very grateful and proud to announce the formal establishment of the Jon Wolff Memorial Fund. This fund will increase our financial assistance program by affording access to genetic counseling for all patients regardless of their ability to pay. The fund will also assist with costs associated with development of interactive educational tools and presentations that will elevate the understanding of genetics and health in the communities we serve.
For those that knew Jon personally, you will well remember he was brilliant and kind, and was there to help anyone in need. I can remember GSF meetings interrupted by calls from friends who had medical concerns for their children, calling their pediatrician phone-a-friend. When loved ones (or friends of friends) had questions about their health condition and care, he would go to any length to find and share the most expert information with them.
As modeled by Jon, at GSF we strive to take a no stone unturned approach to ensure patients get all of the information they need to make informed decisions about their care. In the past two years we have had countless patients who have been empowered to understand their genetic risk for cancer and have been able to take steps towards cancer prevention and early detection because we have been able to help them recognize the genetic predisposition to cancer that runs in their families. We have had patients who have become pregnant and given birth to healthy babies from embryos that IVF clinics were concerned to transfer due to their misunderstanding of uncertain genetic findings. We have been able to help people understand the genetics of their neurological diseases and find some peace of mind in learning that their children and grandchildren will not experience the same debilitating condition that they suffer from.
As we look ahead to how we can further our mission to improve access to fact-based, equitable genetic counseling to all who need it, we are partnering with clinics who serve low-income patients who may not otherwise have access. We are also working to collaborate with Family Medicine Residency programs to support greater genetics education in primary care. Genetic testing has the potential to alleviate uncertainty and to enable people to make well-informed health care decisions, but due to the dizzying pace of advancements, the nuances of such testing are often not well understood by health care providers who do not practice within the genetics specialty.
During this era where there is a huge commercial business interest in selling genetic tests, which may or may not be in the best interest of patients or consumers, we provide a completely unique resource as the only nonprofit dedicated to providing independent, and impartial genetic counseling.
Our approach, unbiased by the financial interests of the genetic testing industry, is important and unique. Make no mistake about it, genetic testing is BIG business. Genetic testing companies that stand to profit from the use of their tests are vying for a slice of the US market that, since Jon’s passing, has grown exponentially and is expected to exceed $10 billion by 2027. Their success depends on effective marketing to increase sales with messaging that makes the complex seem far more simple than it really is.
Here at GSF, we define success as every patient having equitable access to unbiased, expert and compassionate genetic counseling care so each can make the best decisions about their own health care and the care of their family.
As we forge ahead Jon continues to be an inspiration to each of us. His hopes and dreams of improved genetic health care for all are the heart and soul of the organization. As we extend our reach in unique and innovative ways, we strive to model excellence in genetic counseling just as Jon continues to be a model for us.