Spina Bifida Awareness Month

Spina Bifida Awareness Month

Image credit/link: Spina Bifida Association - Awareness Month (spinabifidaassociation.org) Nearly 166,000 people in the United States have Spina Bifida.1 The literal meaning for Spina Bifida is “split spine” and it usually occurs within the first month of pregnancy when the neural tube is forming.  The severity of the disease varies depending on several factors, including the location on the spine and the size of the opening. It is sometimes referred to as the ‘snowflake condition’, because each case of Spina Bifida is different. 

What is Spina Bifida Awareness Month? 

Spina Bifida Awareness Month is an opportunity to raise awareness and increase support and resources for all those living with Spina Bifida.  Sharing stories about people in your community or family who are living with Spina Bifida is a great way to increase awareness and help people understand ways to support individuals with Spina Bifida. We can encourage each other to get involved in advocacy activities and help spread the word about ways to be helpful within every community.

Ways to Support Spina Bifida Awareness Month

Stay current on social media: Follow the Spina Bifida Association on social media on their Facebook, Twitter, and Instagram accounts for ideas on ways to participate in advocacy, events, and more.  Share your story: if you, a loved one, or a friend are living with Spina Bifida, sharing your story online is a powerful way to increase awareness and understanding. Upload videos, social media posts, pictures, or blog posts and tell the world about the incredible things people with Spina Bifida achieve each and every day.  Advocate: There are many opportunities to help advocate for the Spina Bifida community. Currently, there is an opportunity to advocate for critical legislation related to home and community-based services that would help millions of people with disabilities access quality home health care. There are also events, ways to give, and other ways to participate by supporting the Spina Bifida community not just in October, but all year.   Walk-N-Roll: October 2, 2021, is Walk-N-Roll for Spina Bifida day. It’s a great way to gather the community to participate in a healthy activity together and raise awareness. If you aren’t close to a scheduled Walk-N-Roll event, you can host your own.  Social Media: During the month of October, share stories and resources on social media using the #SpinaBifidaAwarenessMonth hashtag.  Join a Chapter: there are dozens of Spina Bifida communities and chapters across the United States. Check out this guide to find one near you! 

Hope’s Story

Hope Ratcliff is a member of the Spina Bifida Associations Advocacy Committee, a UDL Specialist at the University of Southern Mississippi, and an adult with Spina Bifida. She shares what she calls “her story” because she isn’t defined by having Spina Bifida. She says:  “I find my place by bringing my uniqueness to the table. My hope is that people will want to hear what I have to say. Want to know who I am. If not, that’s ok too. That is the chance we all take. Awareness, for me, works much the same way. It’s not about me trying to convince people that I have Spina Bifida (SB), or that I struggle with SB, or that I thrive with SB. That is all true. That is just my story. It is up to others to decide whether or not they care and what they’re going to do about it.” Read more of Hope’s story here

Join the Thrive Community!

The Thrive Community Facebook Group is a private space for any person with a disability, as well as caregivers and healthcare providers that touch their lives. Our purpose is to provide a safe, educational space for group members to ask every question, connect with their peers, and empower each other through communication and connection. Our conversations are led by incredible individuals who themselves are living and thriving. For more enlightening resources, information, and discussion, join the Enemeez® Thrive Community today!   Disclaimer: The material contained is for reference purposes only. Quest Products, LLC does not assume responsibility for patient care. Consult a physician prior to use. Copyright 2021 Quest Products, LLC.   Sources: