Trisomy Awareness Month 2024
Introduction: As February draws to a close, we usher in a month of advocacy, education, and unity in support of individuals and families affected by trisomy conditions. Trisomy Awareness Month, observed throughout March, serves as a beacon of hope, fostering greater understanding, compassion, and acceptance within our communities. Standing at the forefront of this movement, SOFT UK continues its unwavering commitment to raise awareness, empower families, and drive progress in the field of trisomy support.
Understanding Trisomy: Trisomy conditions, such as Trisomy 21 (Down syndrome), Trisomy 18 (Edwards syndrome), and Trisomy 13 (Patau syndrome), among others, are genetic disorders characterised by the presence of an extra chromosome in cells. While each trisomy condition manifests uniquely, they often present significant developmental challenges and medical complexities. Despite these hurdles, individuals with trisomy conditions enrich our lives with their resilience, joy, and unique perspectives.
Empowering Families: At the heart of Trisomy Awareness Month lies the empowerment of families navigating the journey of trisomy. SOFT UK stands as a pillar of support, providing resources, guidance, and a nurturing community for families from diagnosis through every stage of life. Through advocacy efforts, SOFT UK amplifies the voices of families, ensuring their needs are heard and addressed by healthcare providers, and society at large.
What To Expect:
This Trisomy Awareness Month we have a lot planned, and we hope you can take part. Below is a list of the different activities we will be promoting to help raise awareness and bring our incredible community together:
Celebration: We want to create a Trisomy Celebration video that aims to celebrate the incredible children within our community who are affected by Trisomy 13 or Trisomy 18, whether that is full, partial, or mosaic. To take part, please email a photo and the name of your child, along with any message you’d like to include, to shaun.dowdall@soft.org.uk
Remembrance: We will be creating a remembrance video for those children who are no longer with us. To take part in our remembrance video, please send your Childs name, and if you would like to include a photo or message, to shaun.dowdall@soft.org.uk
Stories: We will be sharing a range of family stories and podcasts throughout the month to help raise awareness of real lived experiences. If you would like to share your own story, either written or on a podcast/vlogcast, then please contact Sonia.sankoli@soft.org.uk
We will be hosting two group calls on Zoom. The first is our Coffee With SOFT call where all families are welcome to attend, catch up with each other, and talk with some of the SOFT UK team. This will take place on Tuesday 5th at 19:30. We will also be hosting a call for bereaved families to come and talk with each other, and members of our SOFT UK team. During this call you can share as much or as little as you’d like. This call will take place on the 26th at 19:30. To receive an invite for either call, please email sonia.sankoli@soft.org.uk
Look out for the announcement for our upcoming face to face events taking part across the UK. Registration will go live for these during Trisomy Awareness Month, and we hope to see you there.
How You Can Help:
One of the biggest ways you can help is by sharing our posts to push the reach further. If you have a story to share, then please do get in contact with us. The more stories and lived experiences we can collate and share, the more powerful our message becomes.
If you want to donate or fundraise for SOFT UK, we have created a dedicated Trisomy Awareness Month 2024 page which can be found here: https://www.justgiving.com/campaign/trisomyawareness2024 On this page you can set up your own fundraiser to support Trisomy Awareness Month, or donate directly to the cause. Your fundraising supports us in delivering our aims for this year, helping to fund our face to face events, put together more material for our upcoming webinars, and most importantly, support families affected by Trisomy 13 or Trisomy 18.