The Pediatric Genetics ECHO aims to improve access to genetic services for children across the state of Mississippi by increasing the knowledge and confidence of primary care providers to identify, evaluate, and manage individuals with genetic conditions. Using case-based learning and brief didactics along with interactive video technology, our PG ECHO program connects groups of community providers with genetic specialists at the University of Mississippi Medical Center in real-time collaborative sessions. This is an interactive learning community with an all-teach-all-learn philosophy.
The Project ECHO® model was developed by the University of New Mexico and has been utilized across the United States and globally to increase capacity to safely and effectively treat chronic, common, and complex diseases whilst dedicating themselves to de-monopolizing knowledge to expand access to best-practice medical care.
Click here for more information: Pediatric Genetics ECHO
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Information taken from: What is Rare Disease Day?
The Buddy Walk® was developed by the National Down Syndrome Society (NDSS) in 1995 to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. The Buddy Walk® has grown from 17 walks in 1995 to nearly 300 walks today. Each year, more than $12 million is raised across the country and around the world to support local programs and services, as well as national advocacy and public awareness initiatives of NDSS that benefit all individuals with Down syndrome.
Information taken from: 2023 Buddy Walk (cmdss.org)
Over seven years ago, our journey began as Running for Lily, a platform to help spread awareness and acceptance for people with Down Syndrome within our community and fundraising for two local organizations that were there for us from the beginning. For the first few years, our annual fundraising event, The Annual Run Up for Downs, we raised over $62,000 for the Central Mississippi Down Syndrome Society and The Little Lighthouse of Central Mississippi.
Looking to the future for our children, we’ve spoken with several families over the years about the things their adult children are doing after completing high school. More times than not, the answer was “nothing” or that there were no opportunities available. There maybe a handful whose children with Down syndrome and other developmental disabilities have jobs. Some businesses may not understand the capabilities or full potential of our children. This is where our new venture, the Lily Pad, comes into play.
Like a frog using a lily pad, we want to be a stepping stone to the next path. The Lily Pad will be a cafe that will employ and train young adults with special needs (not just Down syndrome) in every aspect of food and hospitality service. This training will encompass social and life skills, providing significant experience that might not be gained in a typical setting. Our goal is to equip these men and women with the tools necessary to obtain employment by local businesses so that they can not only achieve their full potential, but display to the community their abundant talents and abilities.
Information taken from: The Lily Pad MS
As part of our collaboration with the craniofacial team, our genetics team is involved in the planning and hosting of the Plastic Surgery Family Fun Day. The inaugural day was in April 2023 at the Mississippi Museum of Natural Science and LeFleur’s Bluff playground as a family-picnic style event. This Family Fun Day is an opportunity for patients, families, and providers to meet and enjoy getting to know one another outside the clinic setting. There are plans for this to be an annual spring event.
Last year's Craniofacial Day of Fun
Developed by the International 22q11.2 Foundation, volunteers spread awareness at their local or regional zoo, park, playground or aquarium by handing out 22q Fact Sheets and educating guests and zoo visitors. Participants are recognizable by wearing official “22q at the Zoo” red T-shirts and “Ask Me About 22q” buttons.
Information taken from: 22q at the Zoo
Step Forward to Cure TSC® is the TSC Alliance’s largest national fundraising program, featuring a series of walks organized by local volunteers and families who are affected by TSC. Successfully launched in more than 30 communities across the United States, this grassroots effort not only generates vital funds for TSC research and support programs but also raises awareness about this disorder.
Information taken from: Upcoming Step Forward to Cure TSC Walks - TSC Alliance