|Our mission||Our Mission is to promote and enhance the lives of all affected by spina bifida.|
Spina Bifida Coalition of Cincinnati
|Ways to help||
Walk & Roll EventHelp with face painting, running game booths, and serve food at a picnic for the participants.
|How you help||The Spina Bifida Coalition of Cincinnati envisions individuals with spina bifida as confident, skilled and productive citizens, advocating for their own health and welfare. Volunteers make this possible.|
|About us||The Spina Bifida Coalition of Cincinnati strives to maximize the potential of every person living with Spina Bifida in the Greater Cincinnati area. We do this by advocating for improved public services, connecting people with others in our community via social events and social media, educating families, teachers, and professionals about what it means to live with Spina Bifida and the resources available to improve quality of life, and supporting our clients through financial aid, and small gifts when at clinic or in the hospital to let patients know we are thinking about them.|
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Spina Bifida Coalition of Cincinnati, Inc. added 55 new photos — at Shaw Farms.
1 day ago
A perfect day for SBCC at the pumpkin patch. We had so much fun making spider webs, decorating pumpkins, taking a hay ride through the woods, and enjoying a delicious lunch. Thanks so much to Dayna Sargent and Julie Green for their help today! ... See MoreSee Less
Thank you to everyone who made this event so fun and enjoyable!!!
2 days ago
Friendship and community are two things we often take for granted, but are integral to happiness and healthy living. For people with disabilities, these aspects of life that tend to naturally occur for many, are often hard to come by. In making friendships, we look for those with common interests and who we “fit in” with. However, for children and adolescents with spina bifida, it can be challenging to feel a sense of belonging amongst school and neighborhood peers, especially when difficulties with social cues, like recognizing sarcasm or reading facial expressions, and physical accessibility get in the way. Instead, they may face unkindness such as bullying, isolation, or simply being left behind.
In an effort to help our young people practice independence and work on social skills in a safe environment, the Spina Bifida Coalition of Cincinnati launched an Empowerment Camp nine years ago for 10-20-year-olds where kids and young adults with spina bifida enjoy a weekend engaged in fun activities with others who are just like them. Although the boys had been at the same Spina Bifida Coalition events in the past, it wasn’t until they shared a cabin at this year’s camp in June, that Landyn, 12, and Scott, 11, developed a friendship they both had been seeking. Describing each other as “funny”, the boys were drawn to each other by their senses of humor. Quickly, they realized they had a lot in common, bonding over video games, swimming, and basketball, and a friendship was born. Since June, their relationship has strengthened with regular get togethers and their first sleepovers. Though they live an hour apart, the boys’ mothers, Ashley and Angell, have dutifully helped them stay connected through periodic weekend visits. “Be more persistent with your kids [with spina bifida].” advises Ashley. “Sometimes they may not have a good experience, but you can always reach out to others to help them move forward in making friends.”
Ashley and Angell are also seeing the benefits of this friendship. Watching your child be left out of social opportunities with their peers, can be so hard for parents. It has been heartwarming to see their children engaged in a friendship where they both feel secure with someone who “gets it”. It also makes visits and sleepovers more relaxed for both child and parent, as there are no uncomfortable questions regarding medical supplies, bathroom breaks, or accommodations. On their weekend sleepovers, Angell states, “When Scott’s here, it’s just relaxing. No one has to wonder. They’re basically on the same pace and just get each other.” Both boys are involved in adapted sports teams, Scott playing sled hockey with the Icebreakers and Landyn participating in the Cincinnati Dragons basketball team, and are well liked amongst their peers at school. But like many disabled children, they are often intentionally or unintentionally excluded or forgotten about when it comes to various social activities outside of school. Even recess, which most children look forward to, can be a source of anxiety or discomfort for a child with spina bifida due to mobility issues and being unable to keep up with their peers. Landyn and Scott naturally understand each other’s limitations and therefore are able to find activities they can both easily enjoy without sparking any feelings of embarrassment or being different. Of Landyn, Scott states, “Differences don’t matter [with us]. He understands me. He is very funny with his jokes that he does at random times and makes me laugh.” It is a unique understanding that is not shared with their able-bodied peers, which emphasizes the value of programs such as the Empowerment Camp. “For all children, but particularly those with chronic health needs, camp gives a place for kids to simply be kids while learning about independence, friendship, and the limits of his/her own bravery.” says Marta Getz, licensed social worker for the Center for Spina Bifida Care at Cincinnati Children’s. “Lasting friendships with those who have similar needs can help with coping as a teen and lead to confidence as an adult.”
Both families accredit the SBCC Empowerment Camp for forging this friendship. Describing camp, Scott states, “I feel happy [while at camp], because I know there are kids like me and kids that are different than me and I’m able to learn about them.” Because while Landyn and Scott enjoy laughs and fun together, especially on their new project creating a YouTube channel called “Spice Guys” where they will sample hot sauces on video, they have also become an invaluable support to one another. Facing surgeries, doctor’s appointments, setbacks, and chronic pain, they lean on each other through the hard times and find comfort in knowing they are not alone. At the end of the day, disabled or not, that yearning for friendship and acceptance is something that connects us all.
#SpinabifidaAwarenessMonth! ... See MoreSee Less
I would love to thank everyone that is involved with this camp, you see Scott is my grandson. He's been a different kid since going, he's more outgoing, he's got a best friend, loves hockey, and he loves to be able to have sleepovers because there he isn't different, they are 2 peas in a pod. For that I'm so grateful! So thank you from the bottom of my heart to everyone involved!💙
1 week ago
When facing any type of challenge in life, there are two paths presented before you- you can let it defeat you, or you can find purpose within the hardship. For John Munnis Jr., the latter was the obvious choice, but it hasn’t always been an easy road to get there. As a young child growing up in Philadelphia, John often felt isolated due to not having connections to people with spina bifida and hydrocephalus. What he didn’t know at the time was this feeling of loneliness and being misunderstood within his community would later become the catalyst for finding his purpose and passion. Today, life is much different for 55-year-old John. For one, he now lives in Lebanon, Ohio. What’s more, his feeling of isolation has transformed into empowerment.
While John enjoys his job at Kroger, he one day realized he wanted to do more with his life and really began thinking about advocacy work and getting connected to people with spina bifida. He had heard of the Spina Bifida Coalition of Cincinnati and in 2002, at 38 years old, a new world was opened to him through this organization. Describing the relationships he’s made through SBCC as “life changing”, John jumped right in to making connections and even joining the Board of Directors.
In 2008, John was invited to a Presidential Forum on Disabilities in Columbus, Ohio where the host had a son with spina bifida. As he listened to her speak and met others through the forum who were involved in advocacy, a spark of passion was ignited. As these new connections began inviting him to additional events and programs, John began to realize the difference he could make.
Describing his main goal for his advocacy work as “ending the stigma of disabilities,” John, who is challenged by the every day consequences of having a disability, realized the effect his voice could have. Jane Gerhardt, Policy Specialist at the Leadership Education in Neurodevelopmental and related Disabilities (LEND) program and University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD) reminds us “The self-advocate is in the very best position to educate us about their lived experience. That’s the most well-informed, impactful, and passionate voice out there. The medical specialists, policy wonks and concerned citizens all have a place in the disability discussions but the self-advocate knows and lives the story the rest of us need to hear and understand. John has the life story, the deep understanding of policy, and a unique ability to genuinely connect with people as he shares his concerns.“
To date, John has attended a plethora of events and seminars, where he has had the opportunity to meet with legislators to address key issues such as inclusion for people with disabilities in the workplace and society in general and universal design to make things accessible for everyone. Furthermore, he continues to educate others about visitability and the minimal accessibility standard, which promotes making the home accessible by having a zero-step entry, accessible half bathroom on the first floor, and an accessible hallway to the main room. Locally, he has met with former Cincinnati Councilman Kevin Flynn to push for the Visibility Ordinance in Cincinnati and continues to report back to the Spina Bifida Coalition of Cincinnati on important happenings here in our community and nationally.
As he has gotten more involved, John has seen the impact of teamwork and the strength in numbers. He maintains, “It takes a team, not just one person,” and strongly promotes cross-disability advocacy due to the similar issues they face. Lack of accessibility, inclusion, and transportation are barriers that affect the disability community as a whole, not just those with spina bifida. Of advocating for the disability community, John states, “I enjoy being a part of a bigger effort. It makes me feel better because I’m not just helping myself; I’m helping other people. That’s where I derive my satisfaction, trying to make the world a more accessible and inclusive place for people with disabilities.”
And John is seeing results of his efforts. Through his participation in one advocacy group, an Accessible Taxi Bill was passed. This bill states that taxis do not have to be licensed as ambulettes to transport some wheelchair uses- increasing the supply of accessible taxis.
However, there is still much work to be done and John has no plans of slowing down anytime soon. While he enjoys doing other things in his free time, such as spending time with family and friends, and listening to live, local music, advocacy is where John’s heart is. Just this year, he has gone to a disability policy seminar as well as the Developmental Disability Awareness and Advocacy Day in Columbus. Next year, he plans to revisit those conferences and hopes to attend a Presidential Forum on Disability Issues in Austin, Texas. His passion for advocacy has spilled over into other causes such as the right to life and low-income families, making John a very busy man.
Today, John is a testament to the way your life and the lives of others can change when you choose to find the purpose in your struggle. He is also a reminder that we all have the capability of making those changes. For anyone who has considered advocacy work, John reminds us, “You don’t have to be an expert on every bill. You just need to know your story and know that it is important.”
#SpinaBifidaAwarenessMonth! ... See MoreSee Less
John Munnis Jr is such a great friend, man, and advocate.
Spina Bifida Coalition of Cincinnati, Inc. added 142 new photos.
2 weeks ago
Another amazing day spent with our families and most loyal and generous supporters. Thank you to everyone who made this day a success.
New photos from Pausing Moments with Nancy Photography. Thanks Nancy for capturing some special moments and special people. ... See MoreSee Less