Today we’d like to introduce you to Zachary Berger.
Hi Zachary, thanks for joining us today. We’d love for you to start by introducing yourself.
I am 18 years old from Conroe, Texas. I am a senior at The Woodlands College Park High School and I will be attending Oklahoma State University this fall, majoring in Sports Media.
I suffer from a rare disease (1 in 4000 births) by the name of lymphatic malformation. Lymphatic malformations are rare, non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. These malformations are usually apparent at birth or by two years of age and Zachary’s were diagnosed at birth. There is no cure and many unknowns about proper treatment with too many misdiagnoses.
I have endured 8 surgeries, all before the age of 11 with the most invasive being a tongue reconstruction surgery when I was 10. This procedure changed my life for the better by reducing the size of my tongue, so when it swells up, which it does randomly, it stays in my mouth. None of these surgeries cured my lymphatic malformation because there is no cure. They were all simply needed to try and improve my life as I will live with it forever.
Needless to say, there were many times I felt down and defeated and felt sorry for myself. But with the support of my family and my friends, I finally decided to turn my adversity into power. To take the hand that was dealt to me and see what I can do to help other kids that feel like I do and deal with the same things.
In 2015, at the age of 11, I became the Texas Youth Ambassador for the Lymphatic Education & Research Network (LE&RN), a global non-profit organization that is headquartered in New York City. Around that same time, he organized his first fundraiser and awareness campaign in the form of a baseball hit-a-thon, raising $5,000 for LE&RN. Since that time, he has started a podcast, sold t-shirts, had an ice cream night, did a 10-hour live charity video game stream on Twitch and organized other restaurant charity days.
In 2018, me and my family started Zac’s Attack for a Cure as a way to amplify his voice and “Attack the Cure for Lymphatic Malformation”. We are in the process of becoming an official chapter of the Lymphatic Education & Research Network. We will be the first chapter that is focused on a condition rather than a state or country.
The mission for Zac’s Attack for a Cure is to spread our message of hope and compassion while raising awareness and funds for research for a cure and treatment for Lymphatic Malformation. We are taking the offensive and believe that a single action can make a difference.
I have also attended, participated in and spoke at LE&RN walks in North Texas. In 2020, I was invited to the Washington D.C. walk and lobby days, where I was going to be the keynote speaker on the steps of the Lincoln Memorial, but due to COVID-19, the event was cancelled.
I was fortunate enough to share my story with Congress electronically and spoke to Congressman Kevin Brady of the 8th Congressional District of Texas on the phone to urge him to help create a National Commission on Lymphatic diseases and include “lymphatic diseases” as a category eligible for study in the Department of Defense (DOD) Peer-Reviewed Medical Research Program.
In September of 2020, I was a finalist for the 2020 RareVoice Award in the category of Federal or State Advocacy: Teen, for going above and beyond to impact policy change for the rare disease community.
This year, I am honored to have been chosen to receive the 2022 Courage Award from the Lymphatic Education & Research Network. The awards coincides with the 2022 Global Run/Walk to Fight Lymphatic Disease, for which will be doing a local event on May 15th, 2022.
I’ve also been lucky enough to be interviewed on a few different Houston TV shows and podcasts to try and spread awareness about our cause.
The most important thing is for people to follow and connect with Zac’s Attack for a Cure. That way people can understand what this is, and then how they can help spread awareness and get involved.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
It’s all been an obstacle. From my own surgeries, days in pain, days of being swollen and not being able to eat or talk to the fight for a cure or at least manageable treatment of lymphatic malformation. But I believe that the best wins come from the biggest challenges!
I am lucky enough to have people in my life who support me and let me be down when I am down but also help me understand that my disease is not who I am, it’s only something I have. But it’s something that I can learn from and help others with.
Thanks – so what else should our readers know about your work and what you’re currently focused on?
I am a senior at The Woodlands College Park High School and I will be attending Oklahoma State University this fall, majoring in Sports Media.
Zac’s Attack for a Cure (www.zacsattack.com) is a chapter of the non-profit organization, the Lymphatic Education & Research Network. We started Zac’s Attack as a way to amplify a voice about lymphatic malformation specifically and “Attack the Cure for Lymphatic Malformation”.
The mission for Zac’s Attack for a Cure is to spread our message of hope and compassion while raising awareness and funds for research for a cure and treatment for Lymphatic Malformation. We are taking the offensive and believe that a single action can make a difference.
Any awards I have won personally or recognition I have received is only great because it gives me a chance to spread the word and raise more awareness. The more awareness there is, the more likely it is we can raise money for research.
Can you tell us more about what you were like growing up?
I’m 18, so I’m very much still growing up! But for the most part, as I mentioned, I believe LM (lymphatic malformation) is something I have and it’s not who I am. I love baseball, sports in general and sports media and broadcasting. I love video games, my family and hanging out with my friends.
Contact Info:
- Email: zacsattack4acure@gmail.com
- Website: www.zacsattack.com
- Instagram: https://instagram.com/zacsattack4acure
- Facebook: www.facebook.com/zacsattack
- Twitter: https://twitter.com/zacs_attack
Image Credits
Zac’s Attack
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