Why should you get involved in the LD NBS Action Network?
Becoming an advocate may seem intimidating at first. Advocates often find themselves speaking with legislators, scientists, disease experts, fellow families, and more. Perhaps you don’t know where to begin or who to talk to. Well, there’s actually no exact formula to follow to become an advocate. Researching how to further newborn screening for your disease is a great first step — which means by reading this, you are already on your way!
Merriam-Webster defines an advocate as “one who supports or promotes the interests of a cause or group.” So, as long as you are supporting the cause of helping those affected by leukodystrophy, you are an advocate. And your personal experience with leukodystrophy means you are knowledgeable about the challenges your community faces. Communicating this firsthand experience will help enact change.
You are an advocate as long as you are helping a cause. In this case, you are helping drive support for newborn screening of leukodystrophy. We are grateful for your interest and efforts, and are here to support you along the way in any way we can!
How to become an advocate:
One of the first steps towards becoming a successful advocate is to become informed. Already, you know how leukodystrophy personally affects your life and the lives of your loved ones. We have helpful tips on how to narrate your story if you’re not sure where to begin. The next step is to research more about the disease, and how newborn screening is implemented in your region. Find out more about newborn screening in each U.S. state here. Additionally, these three pillars of newborn screening: 1) Know Your Disease, 2) Know Your State, and 3) Know Your Story will help guide the research process.
The next step will be to gather support. This includes the support of your dear friends and family, but may also encompass the assistance of experts in the legislative, scientific, and medical communities. For example, some states in addition to having a Newborn Screening Advisory Board might also have a Rare Disease Advisory Board. Befriending the experts on the Rare Disease Advisory Board will make the process of adding your disease to the newborn screening panel go smoother. In terms of gathering support of your fellow community members, it might be helpful to go online. If possible, find like-minded advocates and share the work you’ve done to garner support. This network may be helpful when the time comes to reach out to decision-makers and influence the passage of a bill, for example.
Finally, it is time for action! Once you’re informed and you have a support network, you have a substantive platform to enact change. This support network will widen as you work to get your leukodystrophy added to the state’s newborn screening panel. And you don’t need to know everything under the sun, like how the chemical reaction plays out in the screening test, but pay attention to key details. Our three pillars of newborn screening may serve as a guideline. Also, research past examples from what other states have done as a reference. Generally, the more you know, the better. And remember, we are here to help. Good luck!
