Each year we are thrilled to recognize those who have done extraordinary things for, and as part of, the Spina Bifida community. The time, enthusiasm, passion, and commitment brought by our volunteers is invaluable and we are extremely grateful for all their work. 

Our Chapter and Volunteer Awards Program is an opportunity to celebrate this work, help us feel connected, and honor those who are giving so much of themselves. The honorees, and what they have accomplished, inspire all of us to bring our very best as we work to build a better and brighter future for all those impacted by Spina Bifida. 

There are 5 award categories, they include:

• Innovative Programming

• Outstanding Program for Adults

• Outstanding Program for Kids 

• Outstanding Awareness Campaign

• Volunteer of the Year – 2 Honorees

 

1. Innovative Programming – This award is presented to the Chapter that best demonstrates innovation, excellence, quality in programming, and program implementation. This year’s honoree is:

Program: Strut and Stroll: Fashion Show for All

Chapter: Collaboration between Spina Bifida Association of Greater New England (SBAGNE) and Spina Bifida Association of Northeastern New York (SBANENY)

For the past 2 years, SBANENY and SBAGNE have partnered with a total of 25 brands and designers serving the disability community through inclusive fashion. This program is the sole adaptive fashion show that features only models with Spina Bifida. Not only does it connect consumers living with Spina Bifida to each other, it connects brands and designers to the individuals impacted by their work, and individuals with disabilities to the innovators of inclusive design. Reaching thousands of individuals, this event has raised awareness about what options exist for people with Spina Bifida, what adaptations and changes are still necessary for fashion to be inclusive, and how consumers and designers go forward together. 

This program has also been highlighted by the Christopher and Dana Reeve Foundation as an outstanding example of combating social isolation during COVID. 

 

2. Outstanding Program for Adults – This award is given to a SBA Chapter that demonstrates innovation and excellence in programming for adults. This year’s honoree is:

Program: Leadership Academy

Chapter: Spina Bifida Association of Greater New England (SBAGNE) 

With the generous support of the Christopher and Dana Reeve Foundation, SBAGNE was able to offer two cohorts of Adult Leadership Academy in 2021. Led by Rita Hudgens, of TransformU in Arizona, participants learned to identify and leverage their personal strengths, focus on mindset, develop leadership skills, and create their own personal mission statement. The response was overwhelmingly positive, and SBAGNE was able to include funds for additional cohorts in the 2022 budget. 

This program has also been highlighted by the Christopher and Dana Reeve Foundation as an outstanding example of combating social isolation during COVID. 

 

3. Outstanding Program for Children – This award is presented to the Chapter that best demonstrates innovation, excellence, quality in programming, and program implementation, specifically as it benefits, serves, or relates to children.This year’s honoree is:

Program: Kids (Virtual) Adventure Week

Chapter: Spina Bifida Association of California 

Kids Adventure Week incorporates elements of an in person overnight camp into a virtual program for children grades K-8. It is an experience developed for children from our Spina Bifida community. Daily activities focus on dexterity, creativity, STEM, and physical movement appropriate for varying cognitive and physical abilities. Participation provides social connections to children with similar interest and experiences, a focus on learning and mindfulness, and a whole lot of fun. It allows for kids to visualize just how many people there are in the world just like them. Children with Spina Bifida and their families can connect locally and beyond. To quote many of the parents and families, “thank you for not only changing my child’s life but the lives of our family!”

 

4. Outstanding Awareness Campaign – This Award is presented to a Chapter that developed, produced, and promoted Spina Bifida awareness materials, social media presence, and/or presentations. This year’s honoree is:

Program: Spina Bifida Awareness Month – State Proclamations

Chapter: Spina Bifida Association of Greater New England (SBAGNE)

Advocacy volunteers in multiple states requested proclamations from their Governors recognizing October as Spina Bifida Awareness Month. Each proclamation detailed the condition of Spina Bifida, the CDC estimate of individuals impacted per state, and the clinics working to support the Spina Bifida population. This effort began in 2020 with Massachusetts. In 2021, building on the initial success in Massachusetts, volunteers in five more states successfully navigated the process.

Providing the opportunity for those living with Spina Bifida to advocate on behalf of themselves, and the Spina Bifida community in their state, was deeply impactful for the teens, parents, and adults who participated in a campaign. Based upon our success, many other chapters have expressed interest in similar advocacy in their states. It would be incredible for every affiliated and corporate chapter to do this annually as part of their Awareness Month activities.

 

5.Volunteer of the Year – 2 Honorees

We are immensely grateful for the efforts of all our volunteers and would like to start by first acknowledging this year’s nominees:

• Chris Darby-King –We don’t expect volunteers to do it all, but Chris really does. When it comes to her dedication to the mission she sets the bar incredibly high and is humble about her many contributions.
• Diane Glass – Diane is an inspiring and quietly effective volunteer who leads with joy. When working with Diane it’s always a positive approach with a “yes, we can do this!” attitude. 
• Jenna Hudson – Let’s talk about someone who is a community builder. Jenna is focused on engaging the Spina Bifida and finding ways for people to interact and get to know each other. It certainly helps that she is a social media whiz.
• Anya Kewley – Anya is a dedicated advocate. She openly shares her story and works to educate the community not just about Spina Bifida but the ups and downs that come along with it. Anya is dedicated to the Spina Bifida community and is always ready to help.
• Kristin Marquis – Kristin’s efforts have helped to increase engagement across all social media channels, and provides valuable, timely information to the community.  Kristin also models how others might use their time and talents to support the Spina Bifida community.
• Jessica Wilkerson – Jessica is an extraordinary resource in helping to build a better and brighter future for all those impacted by Spina Bifida. She is determined that no one miss out on the opportunity to be fully engaged with the community. 

This year in a slight departure as we are recognizing two volunteers. We are pleased to announce Kristen Marquis and Jessica Wilkerson as the Spina Bifida Association 2022 Volunteer of the Year honorees.

• Kristin Marquis – Kristin has many roles at SBAGNE including Board Member, mentor, and committee volunteer.   She is the FRC representative, serves as a lead mentor for the Teen Empowerment Program, and volunteers for many events and campaigns. Kristen has also become a vital member of the communications team tirelessly using social media to communicate SBA programs, resources, and activities. Kristin meets regularly with stakeholders to develop the social media strategy and outreach.  She creates and schedules all posts, manages both the Facebook and Instagram accounts and has recently begun to extend SBAGNE’s LinkedIn presence.  Kristin is creative, meticulous, and incredibly responsive to ongoing requests and updates.
• Jessica Wilkerson – Jessica Wilkerson joined the Spina Bifida Association of Kentucky board in 2021 and became engaged very quickly. She was instrumental in planning and executing the 2021 Walk-N-Roll in Lexington, KY, and her team, “Rynlee’s Renegades” raised $4,500. She also partnered with staff to make the Lexington Holiday Party a success. And in 2022 Jessica has become the breakout SBAK MVP. SBAK is in its third year running the Express Feedback for Good campaign, a fundraiser that trades surveys for dollars. This fundraiser takes an incredible amount of time and needed a strong volunteer leader to help make it both successful and sustainable. Jessica stepped into this role in an extraordinary way. She led the charge with daily social media posts and reminders, drafted email, and text messages for participants, encouraged the entire community, and supported other teams by giving them direction, advice, graphics, and verbiage to activate their own networks. Jessica had the highest number of participants for her personal team and created more than $5,000 for the Express Feedback for Good campaign. Jessica accomplished this while raising three young children, one with Spina Bifida, and completing law school finals. 

 

Wow, what an impressive group of programs and volunteers! Thank you to all those who work on behalf of the Spina Bifida community. We look forward to learning, improving, and growing as we work together on future endeavors.