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How to Get Involved with Spina Bifida Awareness Month

October is Spina Bifida Awareness Month. I’d like to talk about some ways you can get involved during this month and all year. According to the Spina Bifida Association (SBA), spina bifida is the most common permanently disabling birth defect. Approximately 166,000 people in the United States are living with spina bifida.

My name is Brendan Downes. I’m a husband, a brother, a father, a son, an athlete, and a Patient Advocate for 180 Medical. Also, I’m one of 166,000 people in America living with spina bifida.

i am one of 166,000 americans with spina bifida
Graphic Credit: Spina Bifida Association

Living With Spina Bifida Means You’re Not Alone

While for some, 166,000 may be a daunting number, I see it as confirmation that we’re not alone.

Living with spina bifida doesn’t have to be a battle you fight by yourself. With so many people affected by spina bifida, we must help each other realize that. Yes, each of our specific health needs and conditions may be different. However, the fact remains that in a lot of scenarios, you are not the first to go down that path, nor will you be the last.

Throughout my life, I have always made a conscious effort to never let my disability define who I am or what I do. However, I think there’s a big difference in letting it define you versus being aware of your disability. We’re only given one life to live. I believe we owe it to ourselves to live life to the fullest, no matter the circumstances.

Of course, I’m not saying it’s easy to accept right away, but it’s important to accept our condition as something that will forever be a part of us. I truly believe that acknowledging and accepting is a foundational step on the path towards finding independence. If you want to read more about my perspective on independence while living with a disability, here is a link to my previous blog.

brendan with his daughter
Me with my daughter

How to Get Involved in Spina Bifida Awareness Month

I personally want to highlight some ways you can get involved in Spina Bifida Awareness Month. Endless resources are available to you online and through great organizations like the Spina Bifida Association.

Donate to Help the Cause

First, if you feel motivated to do so, you can make a donation of your service, time, or money to the Spina Bifida Association at their Ways to Donate page.

Connect with Your Local Spina Bifida Association Chapter

Also, you can connect to find your nearest local chapter of the Spina Bifida Association, so you can start meeting other kids, adults, and families impacted by spina bifida.

Participate in Local or National Events for Spina Bifida

Next, I want to bring awareness to the three big yearly events that the Spina Bifida Association has. Two of these are usually held through local chapters, and one is a national event.

Every year, the Spina Bifida Association chapters host their biggest fundraiser, Walk-N-Roll. According to the SBA, over 25 Walk-N-Roll events took place in 2019 with over 5,600 participants, which raised over $540,000.

Over the years, 180 Medical has enjoyed taking part in community Walk-N-Rolls at locations across the country. Plus, we always like to take a day in October to wear yellow and teal to show our support. In addition, 180 Medical is proud to be a Silver Sponsor of the 2020 Virtual Walk-N-Roll event, which will be on October 25th this year.

2020 Walk-n-roll sponsor 180 medical
180 Medical was a proud sponsor of the 2020 National Day of Walk-N-Roll for Spina Bifida

I have personally been a part of the Spina Bifida of the North Texas Chapter’s Walk-N-Roll annually. It’s a wonderful event for everyone, full of fun, food, face-painting, and giveaways, all of which help raise funds for spina bifida (special shout-out to Robin Lee and her team!).

Another excellent annual event done by local chapters of the Spina Bifida Association is their annual Education Days. Per the Spina Bifida Association, Education Days “provide vital information on medical and psychological issues about living with spina bifida.”

I’ve participated in several of these events over the years. I can personally attest to how great and informational the Spina Bifida Association’s Education Days are. If you or a loved one have spina bifida, I highly recommend attending an Education Day near you! Find out more information about Education Days here.

Advocate through Teal on the Hill

Lastly, I want to highlight the advocacy efforts by the Spina Bifida Association on Capitol Hill through their Teal on the Hill event. People in the spina bifida community come together all across the country for this big event.

Teal on the Hill advocates for issues affecting those with spina bifida. This includes disability rights, medical supplies, resources, funding, and affordable, accessible health care.

The Spina Bifida Association went virtual for this year’s Teal on the Hill due to the pandemic with plans to do the same in 2021.

No matter where you live, you can participate and advocate.

Any Effort to Get Involved Is Never Wasted

I have always felt in anything I have done in life, it’s my responsibility to continually make it better for someone else who may face similar circumstances.

We never truly know the impact we have on others. However, the fact remains that any effort to improve the lives of those around us is never pointless. Whether it is giving through time, monetary donations, or other ways of involvement, advocacy, and support, the most important request I have during Spina Bifida Awareness Month is your participation.

We have many ways of educating ourselves, becoming advocates, and bringing awareness about the issues those of us living with spina bifida face. Which path will you choose this month?

get involved in spina bifida awareness month
Graphic credit: Spina Bifida Association
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About the Author
How to Get Involved with Spina Bifida Awareness Month
Brendan is a 180 Medical Patient Advocate, where he visits children, adults, and families in healthcare facilities across the country to support and mentor how he can.

Outside of work, he loves spending time with his wife and daughter, playing adaptive sports like wheelchair softball, and traveling.