BILLY Footwear

In this episode of Open Book, we hear from the National MPS Society: Bethany Greene, Director of Development and Program Support; Leslie Urdaneta, Director of Family Support; and Stephanie Cozine who is on the Board of Directors. The National MPS Society and its members raise money to provide student fellowships and fund research projects. They participate in and host technical conferences that allow researchers to collaborate and discuss their findings. They collaborate with other lysosomal storage disease (LSD) patient support groups and family research foundations to fund research. Their family support programs range from continuing education scholarships to medical travel expense assistance, and they publish a series of resource guides dealing with specific syndromes and treatments that can help families learn more about the MPS diagnosis and the future to come. Their digital newsletter, Courage, features stories on research and medical advances, family news, upcoming events, advocacy opportunities and fundraising efforts. Each year, they hold a conference at different locations, enabling families to meet and learn more about their disease. They also provide emotional support to all those affected by MPS. They sponsor public events, craft press releases, publish syndrome and treatment materials, and maintain a website. This website provides updates on research, legislative activities, family support and upcoming events. They work toward enhanced treatment research and cultivate working relationships with congressional offices and government agencies and advocate for enhancements to federal programs, such as SSI, Medicaid and others important to our families. They participate in international symposiums with a global contingent of medical and scientific professionals and networks with a growing number of international sister organizations. To learn more about the National MPS Society, please visit the following links: Facebook: @NationalMPSSociety Website: mpssociety.org

Introducing Limitless, BILLY Footwear's most advanced footwear collection, designed and engineered in collaboration with Children's Specialized Hospital to alleviate pain and discomfort associated with many health conditions. We spent 2 years collaboratively developing this product to push the limits of comfort and style, delivering a shoe that helps people thrive, limitlessly. United by an unwavering commitment to serve and build community, the unique partnership between Children's Specialized and BILLY Footwear centers consumers that have been historically underserved by other footwear brands. ??

In this episode of Open Book, we hear from Kate Bluth, a loving mom of two rockstar girls, one who has spastic diplegia cerebral palsy. Hear their family story on how they stay active and thrive. And follow Kate and her girls on TikTok at @pedalprincesses

In this episode of Open Book, we hear from Michelle Short, founder of the non-profit Riley's Residence, a center that will offer comprehensive therapies including physical, occupational, speech, and aquatic therapies; and amenities like a theater for family movie nights, which doubles as a worship space on Sundays, and a salon for personal care. Employment opportunities within the facility will be available for those who are capable, promoting independence and dignity. Moreover, we aim to improve conditions for caregivers by offering competitive wages, onsite daycare for their children, better work environments, and educational opportunities, including internships for aspiring special education professionals. Our vision is to foster a community where everyone is valued, supported, and empowered to thrive. To learn more about Riley's Residence, please visit the following links: Instagram: @rileysres Website: https://lnkd.in/gRBqmEt8

In this episode of Open Book, we hear from Austin Scott, founder and Executive director of Rx Gaming. Rx Gaming was founded in 2022 with a mission to improve the lives of people with disabilities by supporting the access, advancement, and awareness of adaptive gaming technology. Adaptive gaming is a way to make video games accessible to people with disabilities by developing specialized hardware and software solutions to accommodate physical, sensory, and cognitive challenges. Adaptive gaming can include modifying games to allow players to use one or no hands, play from a wheelchair, or use voice controls. Austin trained as a fellow at Cincinnati Children's hospital and is an attending physician at Riley Hospital for Children. To learn more about Austin, Rx Gaming, and the Rx Gaming team, please visit the following links: Instagram: @rxgamingcharity Website: rxgaming.org

In this episode of Open Book, we hear from Paula J. Del Giudice, Executive Director at Little Bit, a Therapeutic Riding Center in Redmond, Washington. Little Bit Therapeutic Riding Center is a community where horses transform the bodies, minds, and spirits of people with disabilities. Since 1976, they have led the effort to help those with disabilities to lead more enriched lives through adaptive horseback riding and hippotherapy. To learn more about the Little Bit Therapeutic Riding Center, please visit the following links: Instagram: @littlebit_trc Website: www.littlebit.org PATH International: pathintl.org

We're thrilled to support Shriners Children's mission through #31DaystoAmaze and grateful to be a part of something amazing! #FitForEveryone

In this episode of Open Book, we hear from Karen Gasperini-Quiles, mom, advocate, chef, model, speaker, and author of children's books. Karen's "Arianna's Magic Boots" series is available through Amazon. Enjoy! To learn more about Karen, please visit her Instagram: @karengasperiniquiles

In this episode of Open Book, we hear from Sydney Stuart, Executive Director of Spina Bifida Association of Iowa. Spina Bifida is the most common permanently disabling birth defect that is associated with life in the United States. It’s a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine”. Typically occurring within the first 28 days of pregnancy, while the neural tube is forming, Spina Bifida often occurs before a woman knows she is pregnant. Spina Bifida Association of Iowa incorporated in 1974. Over the past five decades, they have enhanced the lives of Iowans affected by spina bifida. Since incorporation, the organization has been steadfast in advocacy and has grown through educational and community events, adaptive recreation opportunities, and financial assistance programs. The organization’s efforts are made possible through the support of passionate and committed volunteers. To learn more about spina bifida and Spina Bifida Association of Iowa, please visit the following links: Website: https://sbaia.org Instagram: @spinabifidaiowa Facebook: @SpinaBifidaAssociationofIowa

In this episode of Open Book, we learn about Maverick told by his mom Amelia and father Casey. Maverick, a little miracle, is defying all odds. To follow Maverick, check out his Instagram (@green_fam23) and TikTok (@ameliamontgomery08) channels. He has 210K followers on Instagram and 2.3 million followers on TikTok!