Ten Years of Genetic Support Foundation

Hello friends of Genetic Support Foundation (GSF)! We hope your 2023 is off to a great start! As we move more fully into this new year we mark 2022 as a milestone and are reflecting on all that we have achieved over the past decade.  

The year 2022 was the 10th anniversary of GSF’s founding. Much has changed in the area of genetics since Dr. Jon Wolff founded our organization. At that time, Jon predicted that genetics would become an increasingly important component to the practice of medicine, and he also saw that without impartial, expert advisors, the full potential of genetic healthcare could not be realized. With a rise in misinformation, commercial marketing and conflict of interest in the clinical genetics field, Jon was concerned about the harm that could arise if patients did not have access to unbiased, independent genetic counseling.

In keeping with Jon’s vision, the importance of genetic information in healthcare has grown enormously over the past decade, and GSF has grown from his inspired idea into a small but mighty team of dedicated individuals that has, and continues to accomplish so much with your support.  

GSF started in 2012 with a website; an open resource for people who seek trustworthy information about genetics and health. In 2015 we created our first educational video, about noninvasive prenatal testing  (NIPT). In the past seven years we have produced a library of videos on a variety of topics of genetics and health, from prenatal testing to hereditary cancer. Many of our videos have been translated into multiple languages and are freely available, and viewed widely around the world.  

In the year 2016 GSF began providing genetic counseling services directly to patients and in partnership with health care organizations from coast to coast. Our innovative use of telehealth in that same year allowed our service to reach patients in underserved communities a great distance from our home base in Olympia, WA. Since that time, we have reached thousands of patients nationwide with comprehensive genetic counseling and support, many of whom would not have had access to genetic counseling services without us. We have helped families understand their risk for cancer due to inherited risk factors, and to work towards better health outcomes with prevention and early detection strategies.  We have supported numerous expectant parents to make informed decisions about a growing number of prenatal genetic testing. We have helped parents find and understand an explanation for health and developmental concerns that affect their children and grandchildren. We have helped solve mysteries in families regarding the underlying cause of heart disease, seizures, intellectual disability, neurological conditions and more. 

The work we do at the Genetic Support Foundation lies at the intersection of science and human health. We see our role as more than genetic test interpreters. We provide the necessary context to genetic information, and to help individuals and families make meaning of this information and how it relates to health for themselves, their family, and the future.   

Through the last ten years, our passion for advocating for best practices, for independent genetic counseling has only grown. We have collaborated on innovative public health initiatives programs, such as the Cascade Screening Connector with the Washington Department of Health, and supported research related to genetics and prostate cancer for veterans.

We continue in disability advocacy, calling for the voices of those with lived experience of genetic conditions and disability to help shape policies and practices regarding genetic healthcare.  

We have had the opportunity to mentor students and trainees from the University of Wisconsin, Boise State University, Massachusetts General Hospital Institute of Health Professions, Sarah Lawrence College and the University of Washington.  

Our team has given presentations across the United States and beyond and authored numerous publications on disability justice, laboratory stewardship, ethical use of technologies in genetics, conflict of interest in the field of clinical genetics and more.

We have accomplished so much in the past 10 years and look ahead with optimism and enthusiasm for what the next decade will bring.  

In the upcoming year we look forward to increasing our outreach to underserved communities, providing support to providers in community health centers, and increasing access to genetic counseling through our no-cost and subsidized genetic counseling services. This increase in advocacy and outreach is made possible by the generosity of our individual donors who have contributed to the Jon Wolff Memorial Fund, as well as grants from the Marie Lamfrom Foundation, the Saticoy Legacy Fund, and the Bainbridge Community Foundation. We will continue to develop educational tools and resources that will allow us to reach more patients and will support informed decisions regarding genetics and health.

As we embrace our second decade here at GSF we celebrate our many successes but realize we still have much work to do. Our priority for 2023 is to continue to advocate for equitable access for patients and clinics, and to advocate for passage of The Access to Genetic Counselor Services Act that would give genetic counselors federal recognition as health care providers by Centers for Medicare and Medicaid Services. This is recognition is crucial for the sustainability of genetic counseling services.

We hope you will stay in touch and be a part of this important work. Consider signing up for our newsletter, and follow us on Twitter and Facebook. Help us spread the word about the important work we are doing at GSF. Also, please consider donating to the Jon Wolff Memorial Fund to help us extend our reach to the communities we serve. 

As predicted by Jon, the work of GSF in this next decade will only become more important and more challenging as new genetic discoveries are made and the commercial influence in healthcare continues to grow. It will require innovative approaches to care that keep people at the core. It will require our collective voice to continue advocating for the importance of independence in genetic healthcare. 

We’re up for the challenge and we hope you will join us.