Social and Educational Programs

SBAGNE hosts a variety of social programs throughout the year. We believe that coming together as a community is an important part of building a network of support that you can rely on whether you are encountering a difficult medical situation, dealing with accessibility issues in your home, school, work, or local community, or just looking for friendships that reflect your own life experience. Take a look at the list of social programs below to learn about opportunities for connection and community.

 

Social Programs

SBAGNE Community Events

Follow us on social media and join our mail/email list to be the first to hear about our upcoming programs, receive registration links, and invitations.

Summer Picnics: We typically host summer picnics in Maine and Massachusetts in the afternoons following our annual Walk-N-Roll fundraisers. After a picnic lunch, participants test out adaptive sports and recreation activities. In the past, we have offered activities like: sled hockey, hand-bikes, adaptive bowling, wheelchair basketball, and adaptive canoeing. We have also offered recreational activities such as swimming, pontoon boating, visits from Disney princesses, and tours of animal farms to pet bunnies, chickens, and cows. In 2020, we hosted a virtual version of this event with video activities from adaptive recreation organizations and videos of farm animals at Pineland Farms where our Maine Picnic was held in 2019.

Holiday Parties: Our annual Holiday Parties are usually held in Maine and Massachusetts in the first week of December. This event includes a hot lunch and holiday treats, a visit from Santa, gifts for children ,, a white elephant gift exchange for teens and adults, music, crafts, and time to make new friends and catch up with old friends.

Wellness Challenge:  In collaboration with the SBA of Northeastern New York, our 30-day virtual Wellness Challenge is hosted through Facebook and the My Fitness Pal app. Each week includes a collection of goals and activities that pull together nutrition, hydration, exercise, meditation, mental wellness, and self-care all through the lens of disability inclusion and living well with spina bifida. All members are welcome to participate regardless of whether you have spina bifida.

Virtual Fashion Show: In collaboration with the SBA of Northeastern New York, our Virtual Fashion Show connects models of all ages who have spina bifida with adaptive and universally designed clothing and accessories. The virtual screening is followed by a roundtable discussion between participants with spina bifida and designers at the fore-front of adaptive and universal design.

Seasonal Parties: We occasionally host seasonal parties for different age groups to provide consistent opportunities to come together, build relationships, and enjoy activities that are inclusive and accessible. An example of our seasonal parties was our 2021 virtual Valentine’s Party series. We hosted parties for a variety of age groups and sent packages in advance containing any supplies necessary to the event. Activities included: music and movement, lava cake baking, card-making, and mindfulness and self-care.

Adult Programs

Adult Group: SBAGNE’s adult group is open to adults ages 18+ who are living with spina bifida. This is specifically intended to be a safe and inclusive space for adults with spina bifida to connect with one another and find support from other adults with shared experiences. Our adult group typically meets monthly at a restaurant, museum, recreation center, or other public space to socialize, have dinner, or try new things. Some of our previous activities has included: dinners out, Boston Holiday Tree Lighting, adaptive rock climbing, Museum of Fine Arts Lunar New Year, Commonwealth Museum scavenger hunt. We advertise this program through social media and our Adult Group email list. If you would like to be added to this list, contact Laura Lambert at llambert@sbagreaterne.org.

Adult Leadership Academy: This 12-week leadership series is tailored to each group of participants to help grow skills related to leadership, self-advocacy, community engagement, employment, organization, local, state, or national advocacy, and more. A maximum of 15-participants are admitted per series to encourage full participation from everyone. We advertise upcoming cohorts through our Adult Group email list, Facebook, Twitter, and Instagram. If you are interested in this program, please watch our social media and make sure you are on our Adult Group email list by contacting Laura Lambert at llambert@sbagreaterne.org.

Parent Programs

Parent-to-Parent: Receiving a spina bifida diagnosis can add a new level of emotional and environmental stress to the experience of pregnancy or parenting. In this program, we connect new or prospective parents to volunteers who have experience raising a child with spina bifida. Region, culture, and language are taken into consideration when matching parents. If you would like to volunteer with this program, please contact Jean Bertschmann at jbertschmann@sbagreaterne.org and let us know which languages you speak and where you live. If you would like to be matched to another parent, contact Jean Bertschmann at jbertschmann@sbagreaterne.org and let us know your preferred language and location.

Teen and Tween Programs

BLING Meets BEST: Open to ages 11-18, this weekend retreat for teens and tweens and a parent or guardian offers sessions on transitioning to high school, college, the workforce, certification programs, adult programs, or adulthood as well as health and wellness, self-esteem, mental health, leadership, and community engagement. Opportunities for recreation and team-building are also included. Separate sessions for parents and guardians are also available and provide information about parenting a child with a disability through life transitions, health needs, and social issues their child may experience. This event typically takes place in early spring, however, the 2021 retreat has been rescheduled for August 27-29 (Nashua, NH) to adapt to COVID-19 protocols for 2021.

The Browne Center: Named after the organization we partner with for this program, “The Browne Center” is open to the whole family. Geared towards teens and tweens living with spina bifida ages 11-18 plus their parents and siblings of all ages, this program puts parents together to build a community of support amongst themselves while the teens, tweens, and siblings work together on team-building exercises that help develop leadership skills, creativity, problem-solving abilities, and unity. These skills translate to navigating life experiences and the outside world with creativity, integrity, and ingenuity.

Quaranteen Hangouts: Developed in reaction to the COVID-19 shut-downs that impacted our ability to bring teens and tweens together, this bi-weekly virtual video chat provides space for youth to stay in touch with friends made at BLING Meets BEST and ensures a community of support in times of social distancing and outside of other, structured programming. If you would like to join this video chat on every other Wednesday at 7PM, contact Jean Bertschmann at jbertschmann@sbagreaterne.org.

Educational Programs

Regional Spina Bifida Conference: Held in alternating years, this conference brings together adults and children living with spina bifida, families, caregivers, medical professionals, adaptive and disability-related support organizations like adaptive sports, recreation, driving, education, and others. The next conference is scheduled for October 22-23, 2021, in Nashua, NH.

Educational Webinars: We periodically host and share educational webinars on a variety of topics from nutrition, exercising with a disability, urological or neurological care, and many other topics. If you would like to view some of our past webinars, visit our Youtube channel at https://www.youtube.com/channel/UCGxy_kGsnr2TG5Ti3kDBMpw/videos.

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