10 ways to get ready for Spina Bifida Awareness Month

10 ways to get ready for Spina Bifida Awareness Month

October is Spina Bifida Awareness Month—a time to celebrate the hundreds of thousands of people living with Spina Bifida. Every October, we share community stories that challenge us to raise more awareness and support around those living with Spina Bifida.  As a community, we can do this by raising awareness about Spina Bifida either in our own circles or to the larger networks of which we are apart. This month is also a great time for us to challenge ourselves to find new ways to get involved in raising awareness and in advocacy activities.

As October quickly approaches, here are 10 things you can do to get ready for Awareness Month and help to make a difference:

  1. Coordinate an awareness fundraising event

We have a list of a hundred ways you can fundraise to raise awareness over October! The list is endless! You could host a bake sale, a game night, a lemonade stand, car wash, craft show, and so much more! Below is a photo of our friend, Graysen, who hosts a lemonade stand for Spina Bifida every October!

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“Graysen was over the moon thrilled when we told him he would be getting a little sister in November. Unfortunately, the pregnancy had complications, Spina Bifida is one of them. Sadly, we lost our little girl when I was 21 weeks. We referred to her as Rainbow because both Graysen and I love rainbows. Since our devastating loss, we decided that we would have a lemonade stand for SBA. The overwhelming support from friends and family brought me to tears. Now Graysen is constantly asking when we can do something for SBA again so we will most certainly carry on the tradition every year.” -Angel Wenk

  1. Set up a Library display case or information table

Did you know that most public and school libraries will allow you to set up a display case on a topic or cause for a week or so? You could set up a library display case with photos, stories, Spina Bifida facts, brochures, etc. This is a great way to raise awareness about Spina Bifida and even disability & accessibility as it pertains to your community! If you’re interested in doing this, we can provide you with your state ’s fact sheet.  Contact us at communications@sbaa.org for a state fact sheet.

  1. Host a school or workplace awareness day

We’ve seen schools that have had a crazy sock day, dress down days, or a Teal Awareness Day – where everyone wears teal for Spina Bifida. Events like this are also doable in the workplace. See if you can host a casual Friday (everyone pays $5 to dress casually), or make October 25th, World Spina Bifida Day, a “paint the office teal” where everyone wears as much teal as they can. Are you thinking about a school fundraiser? Check out our school form you can use to give to your school administrators!

In 2015, all of the students at this elementary school took a picture to promote Spina Bifida Awareness and support their classmate, David (seen holding the sign), who was born with Spina Bifida Day on World Spina Bifida Day.  

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  1. Stay up to date with all Awareness Month activities with us on Social Media

In the coming weeks, will be sharing graphics, stories, facts, and more. Follow SBA on Facebook, Twitter, and Instagram! Additionally, this year, we’re partnering with Redefining Spina Bifida to raise as much awareness as we can around Spina Bifida. Be sure to check them out and follow their social media pages too!

  1. Advocate with the Spina Bifida community

SBA is always busy advocating for the Spina Bifida community. When we’re not on Capitol Hill in meetings, or working on our annual advocacy day –  Teal on the Hill, we strive to bring awareness and advocate for bills and funding that are important for the Spina Bifida community. Right now, you can get involved by advocating against competitive bidding for wheelchair accessories.  Under the current policy, individuals with significant disabilities who use Complex Rehab Manual Wheelchairs have less access to the needed wheelchair components than those who use Complex Rehab Power Wheelchairs. Help protect access to this specialized equipment for people with disabilities by using this advocacy tool (it only takes a few clicks)

  1. Walk-N-Roll for Spina Bifida

Fall is the busiest part of our Walk-N-Roll season! There is a good chance a Walk-N-Roll event might be taking place near you. Don’t know what a Walk-N-Roll is? Watch this video! Walk-N-Roll for Spina Bifida is the perfect awareness month activity to engage your friends, neighbors, co-workers, family and more. Invite them to join your team, and spend the day connecting and meeting others in your local community! If you cannot make a local walk, join our new program My Walk-N- Roll for Spina Bifida. You pick a time, date, and location that works for you and host your own walk. October 25, World Spina Bifida Day is a great day.

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  1. Contact your local media

If you’re hosting an awareness day, a community event, or going to your local Walk-N-Roll, reach out to your local media and ask them to provide coverage of your awareness activities! Newspapers, radio stations, and TV stations are all interested in stories that speak of overcoming adversity and connecting as a community. Here is an excellent resource with tips to get your story covered by local media!

  1. Join Team Spina BifidaScreen Shot 2018-09-10 at 7.54.48 PM

If you are or would like to participate in a marathon, half-marathon, or another athletic event to raise awareness for Spina Bifida – Join Team Spina Bifida! You can choose your inspiration, location, and race. 

  1. Become informed and stay connected

Sign up for our electronic newsletter! We share Spina Bifida news, research updates, local and national events, advocacy opportunities, and information on education and support. Just fill out this form, and you’ll be added to our list.

  1. Share your story

Spina Bifida Awareness Month is an incredible time to share stories to connect with each other and spread awareness about Spina Bifida. Every year we ask members of the community to share their story on social media and with us (click here to view our 2017 storybook).  If you have a story you want to share that will help raise awareness about Spina Bifida, email us at communications@sbaa.org. We can’t promise that we’ll get to share it, but we can promise that every story shared helps raise awareness! 

 


One Reply to “10 ways to get ready for Spina Bifida Awareness Month”

  1. I have looked over this entire page, that was emailed to me. I am Ryan Krygier age 42 with Spina Bifida level L4/L5 and also have V-Plural Shunt (to the Plural Cavity, behind the lung.) Living in Grand Rapids, Michigan (in the winter) and Grand Haven, Michigan (in the summer). I am very involved in the “summer community”, where I live. I the winter (school year), I teach elementary age school at a catholic classical Academy in Grand Rapids, Michigan. (My profession has nothing to do with me having Spina Bifida.) Finally, I call square dances. (The only square dance caller in the United States using a wheelchair.) I also sing polka with polka band in Michigan. I also started and administrate the FB Page: Everyone Being Aware of Spina Bifida. I do have to say, this page is different from other SB FB Pages. I am also going to email my story to the address provided.

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