We all need a place to feel like we belong, where others share the daily struggles and the fears and dreams we have for our children. Siblings of children with special needs need an opportunity to meet each other and realize they are not alone. We deserve the chance to just be ourselves, surrounded by others who understand and simply accept us just the way we are. Have you found your place of belonging? In sharing my experience with one such community, the Smith-Magenis Syndrome (SMS) community in the United Kingdom, I hope to inspire you to seek your place of friendship, support and resources for your journey.
Reflecting on a busy month of May for Abram’s Nation, one of my highlights was attending the Smith-Magenis Syndrome Foundation conference in the United Kingdom. Every two years, the SMS community gathers in the UK for education, support and – most importantly – celebration! With daily scientific summits and educational workshops that turn into nightly parties with singing, dancing and the infamous photo booth, this conference is always one for the books! I’m in awe of how many people make it a priority to attend this conference, from families, therapists and caregivers, to researchers, product manufacturers and business owners. This is a tight-knit community that truly cares for each other.
Among this year’s attendees were some of our international distributor partners: Robert of Murray’s Medical in the UK and Republic of Ireland, and Derek of Human Protection, which serves our families in the Netherlands, Denmark, Sweden, Belgium and Germany. I had the opportunity to show Robert and Derek some new features in our upcoming product releases and discuss how we can continue to serve families. I am so grateful for partnerships with Robert, Derek and our entire network of distributors who make it possible to share The Safety Sleeper and other Abram’s Nation products with our international community of families.
I also had the tremendous opportunity to meet Carrick Brown of Newlife, a UK organization on a mission to ensure that every child with special needs has access to equipment and services, while also providing needed support to their families. It was so encouraging to hear Carrick share how The Safety Sleeper is helping families across the UK. We continued forging our friendship with the opportunity to meet in person, share ideas and inspire each other with plans to make even more meaningful impact for our community in the UK.
Perhaps the most rewarding aspect of the SMS Foundation Conference is the celebration of friendship. Counting Robert, Derek and Carrick among them, I have made many friends in the special needs community over the years and continue building new relationships each year. I always love when I can meet a Facebook friend in person! It is such a pleasure spending time with my friends and celebrating the joy they bring to my life, whether we’re sharing information and supporting each other or showing off our skills at karaoke pizza parties and disco dances with the whole family. I am grateful for the opportunity to listen to families, hear their stories and feedback, and share ideas for how we can further impact their lives. These authentic relationships motivate me to develop new solutions, update designs and find additional avenues to support our community of families. I leave every conference with a long inspiration list!
At this year’s conference we also shared news of our Pay-It-Forward program with our international community, inviting families around the world to participate in our monthly giveaway program in celebration of the 10-year anniversary of Abram’s Nation. We announced that we’re going out with a bang at the conclusion of the program in November, with FIVE Safety Sleeper giveaways! If you haven’t submitted your nominations yet, get in on this opportunity!
While still reveling in the memories made during this year’s conference, I am already anticipating the next UK conference in 2021. In the meantime, I look forward to hearing updates from the community, learning more from geneticists about their ongoing research, and seeing some of my SMS friends again at the PRISMS conference in the U.S. this fall!
I’m thrilled to count you among our Abram’s Nation community and encourage you to find as many resources as you can, whether you would like to learn more about SMS or another diagnosis, learn about available services, or discover a community of support and belonging. Not sure where to start? Check out our resources and please share with others!