Our Stories
Millie’s Story: A Warrior’s Quest to Raise Awareness
By: Charlotte Bedford, United Kingdom Millie was born in 2010, after a normal pregnancy and birth. It soon became apparent that Millie wasn't gaining the weight, and we were given the diagnosis of "Failure to Thrive". Months of high calorie milk and tests...
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L’histoire de Robin: un petit guerrier
by Cecile Garaud Robin est un petit guerrier, je l'ai su dès que le test a viré au bleu. Une conviction qui s'est affirmée tout au long de cette grossesse qui a pris la forme d'un marathon, d'un parcours d'obstacles que l'on a franchi avec courage, un mois après...
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Logan’s Story: From his Proud Mother
By: Julie Hill Rare is proud, rare is strong, and this is our story so far… After many years of IVF, we had our first-born Isaac, who was born 13 weeks premature. But still I longed for another baby. We lost a baby in between and around the due date of this...
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Olivia’s Story: A Journey of 35 Years
By: Maree Grover, Australia Our daughter Olivia is the fifth in our family of five children and was born in June 1985. She was a smaller baby than her siblings and I had been very unwell for all of that pregnancy. Olivia was a breastfed baby until about 8 months...
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Brandon’s Story: Rare is Strong
The following is a story about the strength of Brandon from Pennsylvania, USA in his mother’s words: Brandon is our 17-year-old WSS Warrior and is the true definition of “Rare is STRONG.” We received Brandon's WSS diagnosis in 2017, so a little later...
read moreFirst Grant Awarded
Our first grant, in the amount of $200,000 has been awarded to Dr. Hans Bjornsson of the University of Iceland. Dr. Bjornsson’s project, Creation of a Specialized WSS Mouse Model to Establish Postnatal Malleability of the Neurological Phenotype in WSS, will take place over the next two years.
read more2019 Research Paper out of Canada
Expanding the neurodevelopmental phenotypes of individuals with de novo KMT2A variants. npj Genomic Medicine volume 4, Article number: 9 (2019)
read morePoster on Genetic Mosaicism in our WSS Community
This poster was created by Dr. Nadia Falah and references one of our WSS Families. Dr. Faleh is a clinical faculty member at West Virginia University.
read moreCoRDS Registry and WSS Statistics 2019
Thank You!
Thank you for your support of the WSS Foundation!
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Emma, our Rhode Island Warrior, Featured in her Local Paper
Read about Emma and her family’s fundraiser for the WSS Foundation in the Bristol Phoenix.
read moreMommy Guilt
Moms are no strangers to feelings of guilt. I’m pretty sure we invented it. Mothers of children with special needs experience guilt in epic proportions. It’s impressive, really, how quickly we can turn every bad situation back around on ourselves.
read moreInterview with a WSS warrior Mom
Interview with a WSS warrior Mom – Shannon Gray answers some frequently asked questions.
Shannon and her family live in Bristol, Rhode Island. Her 4 year old daughter Emma is a super hero, firefighter, princess and WSS Warrior!
Dylan’s Story
The moment Dylan was born, his dad Jacob knew something wasn’t right. A few minutes later Dylan needed intubation and spent his first hours in the NICU.
read moreMother Grapples with Mystery of Wiedemann-Steiner Syndrome
Tale of two families: Exome sequencing and faster diagnosis of rare disorders
Ohio State’s Special-Needs Preschool
CoRDS Registry and WSS Statistics 2018
WSS Foundation Store!
The WSS Foundation is pleased to offer a variety of logo imprinted items to help spread awareness for the foundation and to show our community's strength. The WSS Foundation will receive a percentage of every item purchased. We hope you enjoy the items we've...
read moreAdult with WSS Speaks for Herself
Alison is a remarkable woman. She is actively involved in the WSS community and has made herself available for countless questions from parents of children with WSS.
read moreWSS Mom and Son Featured in Their Local Newspaper
Cara Larson celebrates Rare Disease Awareness day by sharing her story in her local paper. Please click on the link below to read her story....
read moreExciting WSS Study in Italy!
If you are interested in participating in the study being completed by Dr. Livia Garavelli in Italy on C-2/C-3 vertebrae fusion in WSS patients, please download the 4 files below (instructions, purpose of the study, a medical history, and consent). Dr. Garavelli also...
read moreRare Disease Week Declared in Jasper Alabama
The city of Jasper, Alabama, recently issued a proclamation declaring February 28 - March 7 as Rare Disease Week in the city. Local children who have been diagnosed with rare diseases were invited to attend a presentation at City Hall. On hand to receive the...
read moreGus’ Story: Our Search For Answers
By: Candace, mother of Gus (age 3) Gus was diagnosed with Wiedemann-Steiner syndrome in July 2017, just shy of his 3rd birthday. Here is our story... "Please don't shoot the messenger, but...can we talk?" I will never forget this day. Gus was 8 months old, and I had...
read moreNew WSS Foundation Board Member: Jacob Cummings
Please welcome Jacob Cummings to the WSS Foundation board. He and his wife, Maria, are already knee deep in planning a Lunch on the Lake WSS Fundraiser in Minnesota on August 4th (see comments). Jacob and his family (wife Maria and 5 Children) are lifetime residents...
read moreArp Family Fights Through Rare Disease
A local broadcast news station ran a story on a family in the WSS community.
read moreCoRDS Registry and WSS Statistics 2017
CoRDS Registry WSS Statistics 2017.
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