“One of life’s most persistent and urgent questions is, ‘What are you doing for others?’”-Martin Luther King, Jr.

When Randi approached me to write something for the newsletter, she said I could write something that is meaningful to me, ‘if I had time’. I just had my second son in July, so as the mother of a newborn and an almost 3-year-old son who was going back to work after maternity leave –during a pandemic on top of it all –you might predict I would pass. I am someone who has difficulty saying no to such requests. It is likely my type A personality and the need to serve the greater good that often leads me to responding yes. For these reasons, I would probably consider myself a professional volunteer if such a title exists. I have volunteered for various endeavors over the years including short term projects like helping to setup at support group walks to participating on committees in my professional society. Dubiously, I responded to Randi with a yes, initially pondering what I would write about. As you might have guessed from the title, I am going to use this opportunity to talk about volunteering and advocacy. Many of us chose this profession in order to help others, so given our altruistic tendencies, advocacy and volunteering seems a natural fit for genetic counselors. It is definitely an appropriate topic given the events of the past year.

I have been working in San Antonio, Texas at The Children’s Hospital of San Antonio as a genetic counselor in a pediatric genetics clinic since I graduated in 2013. I love my job and my co-workers. The Children’s Hospital of San Antonio serves a population with many uninsured or underinsured patients, where English is not the first language for many of our families. These are often families without many resources and as such one of the goals of my volunteer and advocacy work has been to improve access to genetic counseling services. Since 2016, one of my primary volunteer efforts has been working on licensure for genetic counselors in the state of Texas. While this effort might benefit the profession, the main reason I continue to volunteer is that I believe the families in the state of Texas should have access to see a genetic counselor, especially those with fewer resources. For those families, navigating the healthcare system with limited medical literacy and financial resources can be overwhelming at the very least. Genetic counselors often serve as advocates for these families and being recognized as medical providers would make us more effective advocates for them.

To learn more about the process of licensure, in 2016 I began traveling with colleagues to visit the Texas legislature to educate state legislators about genetic counseling and licensure. Since that time, I have handed out flyers, lobbied and worked wtih my local representatives on a draft bill, met with other organizations’ lobbyists and talked with my own institution’s government affairs team about licensure. Unfortunately, the Texas legislature only holds sessions every other year, so it has been a slow process towards getting a licensure bill passed. This process has been agreat learning experience. One key lesson I learned from my advocacy efforts is that the people who work in these legislative offices are passionate about their work and if you make the effort to talk to them, you will make connections that will pay off in the long run. I continue to work with other passionate genetic counselors in Texas towards getting our bill passed in the upcoming Texas legislative session.

I have also volunteered as a leader or committee member on the NSGC Clinical and Pediatric SIGs for many years. Once in a leadership position, I worked with other genetic counselors to revise guidelines for Research Grants, create a Travel Award and worked towards increasing engagement among the membership. Now, as a member of the Resource Committee, one goal has been to create a resource bank for clinical genetic counselors. Genetic counselors who work in a general, clinical or pediatric genetics clinic setting seem to have limited time especially when we are researching the newest rare syndrome, writing or editing letters of medical necessity for needless genetic testing denials, and juggling many administrative tasks. Many of us end up working late or on weekends to try to stay afloat. If these resources could be accumulated and disseminated easily, then I can only imagine the amount of time we might save. This time savings might allow a better work/life balance, improved satisfaction with our jobs with less burn out, and potentially the ability to use our energy towards other important, meaningful or personal endeavors or projects. I continue to volunteer on this effort in the SIG to help my professional colleagues.We all have unique experiences and knowledge to share and if we can bring our collective knowledge and experiences together, it could benefit us all.

In the past 5-6 years, I have become a professional volunteer because most of my volunteer efforts have been on projects or goals that have made incremental changes and improvements.I encourage you all to think about what you can offer and work towards those goals even if it takes a long time. So, here is the elevator pitch: I encourage you to volunteer and/or advocate for one or many professional and/or personal issues as your heart can hold and your head desires. You can volunteer for a professional issue within genetic counseling, a patient advocacy group, or another issue close to your heart. You may not know the “language” just like many people do not understand our language of genetics. Be prepared to talk to a lot of people, possibly tell a personal story and ask a lot of questions. Over the years, I have found that people remember stories about you or your personal experiences. That’s what I remember about every patient I have seen, their stories of triumph, suffering, and perseverance. The time I have spent on volunteer work and advocacy efforts has been a journey, but I’ve never regretted any of it. During this stressful time, maybe the best way to spark goodness and change is by helping others.