Community Spotlight: Adrienne Vollmer
In May, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for SMA and SCID. Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely advanced by the efforts of Adrienne Vollmer, newborn screening advocate and SMA mom. The signing was held at the Cure SMA Walk for Graham, an event organized by the Vollmer family and benefitting Cure SMA.
Adrienne recently shared with us her advocacy experiences and advice.
Cure SMA: Tell us a little about your family:
Adrienne Vollmer: I live with my family in Westfield, IN. My husband Nick and I have been married for 11 years, and we have three beautiful children. Ben is 8, Lucy is 6, and Graham is 3. Graham was diagnosed with SMA type 1 when he was 7 weeks old.
CS: Why did you choose to start advocating on behalf of SMA newborn screening?
AV: When Graham was diagnosed, it was one of the scariest times of my life. To think that I might lose a child was something I couldn't possibly wrap my head around. We decided at that point that we would always advocate and fight for children and their families who were going through this experience. And most importantly, I wanted to feel like I was doing something to make a difference.
CS: What has been your experience advocating in Indiana?
AV: I have been welcomed by the legislators here in Indiana with open arms. State Reps Doug Gutwein and Donna Schaibley really paved a way for me into the decision-making process and helped give my voice a platform to stand on. For me, just knowing that I had the right people in our corner made all of the difference in the world.
CS: What are you most proud of in regard to your advocacy?
AV: Being able to have the opportunity to share Graham's story in front of the Indiana House and Senate, and having the newborn screening bill passed with 100% agreement from both sides of the aisle... these are things that I will never forget. Truly once in a lifetime opportunities for me.
CS: What has been the most challenging part of your advocacy experience, if anything?
AV: I would say that the only challenge is stepping outside of my comfort zone and really be willing to stand up for what I believe in. The newborn screening didn't directly impact my family, but it was really important to me to step up and try to make a change for those families yet to be diagnosed. Fighting for those babies that aren't born yet.
CS: Indiana is one of six states that have passed laws adding SMA to their newborn screening panels. Do you have advice to advocates in states where things aren't moving as quickly?
AV: My advice would be to utilize resources from other states. Look at states like Indiana and Missouri where these laws have successfully passed and see if you can get those legislators to make some phone calls for you. I bet they will, and I'm sure that it will help pave the way to the right people. It's all about getting in front of the right people.