About Us
about us
Meet the NWSS Warriors!
Pleased to meet you!
NWSS Warriors is a charity and awareness platform that we’ve set up through our own personal experiences with Wiedemann-Steiner Syndrome, or WSS.
We are a community of people affected by a condition that is still very much misunderstood. We are parents, siblings, and children of everyday people living with WSS. Many of us, too, also live with WSS ourselves!
WSS Warriors, Solidarity in Support
We’re dedicated to building a supportive community for everyone impacted by Wiedemann-Steiner Syndrome. With limited information on WSS available, we’ve created a safe space for sharing stories, experiences, and encouragement.
As a charity, we’re focused on raising awareness and funds to assist those diagnosed with WSS, providing access to essential therapies, learning support, and mobility equipment. We aim to educate the broader community about this rare condition and the challenges it presents.
Offering empathy, understanding, and respite, we strive to enhance the lives of those affected by WSS. At NWSS Warriors, you’ll find a compassionate network ready to support you through uncertain times. Together, we can navigate the journey with strength and hope.
Warrior Mums
Meet the support crew
Alison
Hi, I am Alison, Co-Founder of The National Wiedemann Steiner Syndrome Warriors. I am Mum to Georgia, and we live in Ossett, West Yorkshire.
Georgia was diagnosed in 2018 through the DDD study in Cambridge that was headed by Dr Wendy Jones. The diagnosis was the final missing piece of the jigsaw for Georgia. It brought together all of her other disabilities under one condition: Wiedemann Steiner Syndrome. Georgia is diagnosed with Autism, Dyspraxia, Hypertonia, Learning Disabilities and Bi-lateral Hip Displacement, all of which are features of WSS.
Our Charity and Website aim to bring families closer together from all over the world and to let you know you are not alone. We are one big family that faces difficult daily struggles, continuously learning from each other.
Joanne
Hi, my name is Joanne, and I am mum to Bethany, who is 16. Bethany was diagnosed with WSS when she was 8/9. I hadn’t heard of the syndrome before I did some research and found Alison on Facebook. We got in touch and met up with our children, which was perfect. We couldn’t get over how much the girls looked alike. Myself and Alison decided to set up a charity which we are all very proud of.
Kelly
Hi, I’m Kelly, mum to Lewis, who is 14, and we live in North Wales with his Dad, Scott and older brother, Sam.
Lewis was diagnosed with Wiedemann-Steiner Syndrome in 2015, aged 6, after being referred to the DDD study in 2012. Getting a diagnosis gave us the reason why he’d had such a tough start in life, but due to the syndrome being so rare, there was no support. In 2017, Alison Sharp joined the WSS Foundation Facebook group (based in the USA) and connected with other UK families and worked tirelessly to get our charity set up. From then on, our UK WSS family has gone from strength to strength. The support from everyone in our group is amazing, and I can’t wait to see what we can achieve going forward.
Clare
Hi, I’m Clare, mum to Jess (16), who was diagnosed with WSS in 2017. I’ve been helping to sort the WSS clothing orders for a few years, and it’s great to see the warriors wearing their tops with pride. I have watched the charity grow from strength to strength and seen the hard work put in by a dedicated team to become an official charity and who continue to drive the charity forward.
Kym
Hi, I’m Kym. Mum to Theo, who is 11. Alison was one of the first Mums who I had regular contact with following our diagnosis 6 years ago. It was a lonely time without much information or support available. We shared a passion for wanting to get the best help and support we could for our warriors and other families like us. And now look where we are.
Charlotte
I’m Charlotte, mum to Millie, who was diagnosed with WSS in January 2020. Alongside WSS, Millie has Autism, Chiari Malformation, Craniosynostosis, Klippel-Feil Syndrome, learning difficulties and global development delay. We are from Worcestershire in the UK.
Amanda
I am Amanda, warrior mam to Emerald, and we live in Northumberland with dad Paul, big sister Tegan and 2 crazy hounds.
Emerald was diagnosed in 2020, just before the pandemic, she was nearly 13. It gave us a reason for lots of other quirks and issues over the years. Emerald loves spending time with her warrior friends, or family as we call them either in person at meet-ups or online. Like many teens, she’s very into music and youtube. As a family, we love to caravan and the great outdoors. Since joining the WSS world we’ve discovered the amazing support of the NWSSW crew. The bigger the family becomes, the more we can all learn and support each other.
Champion of Genetic Research and WSS Awareness
Spotlight on Dr. Wendy Jones
Meet Dr. Wendy Jones, a leading consultant in Clinical Genetics and Genomic Medicine at Great Ormond Street Hospital, and an Honorary Associate Professor at University College London (Institute of Child Health).
With a deep passion for chromatin disorders, including Wiedemann-Steiner syndrome, Dr. Jones has significantly advanced research and understanding in this field.
Her work at Great Ormond Street Hospital, along with her innovative research at the Wellcome Trust Sanger Institute, has shed light on the complexities of WSS and related disorders.
Dr. Jones’s dedication to genetic research and her involvement in the Deciphering Developmental Disorders Study highlight her commitment to enhancing the lives of those affected by genetic conditions.
As a cherished ally of NWSS Warriors, she continues to provide invaluable insights and support, helping to raise awareness and drive research in Wiedemann-Steiner Syndrome.
Get In Touch
Let’s understand WSS together.
