The Wiedemann Steiner Parents Network has developed over the past few years as parents of Wiedemann Steiner children, as well as adults with Wiedemann Steiner Syndrome, have reached out to each other via the Internet.
As of July 2016, there are approximately 45 families in the network as well as a few Wiedemann Steiner adults. Locations of those with the Syndrome include the United States, Canada, England, Japan, Northern Ireland, Iceland, Norway, and more.
Active discussion of the Syndrome, symptoms, treatments, and therapies is occurring via email and on Facebook.
If and only if you are a Wiedemann Steiner Syndrome parent or an adult with Wiedemann Steiner Syndrome, email us and we will invite you to our discussions. For those who are not on Facebook, or who are on Facebook but would prefer not to engage in medically sensitive discussions online, email us and we can connect to you via email or telephone.
One goal, of course, is to advocate for those with the syndrome. This includes supporting those performing research on Wiedemann Steiner Syndrome. We host a page noting some of those researching WSS, who we can assist by supporting their research as well as by offering subjects for Wiedemann Steiner Syndrome research.
We have also begun fundraising efforts to directly benefit WSS patients. This includes a campaign at GoFundMe that assisted a few families traveling to the first Wiedemann Steiner Syndrome clinic, held at Johns Hopkins University in June 2015.v
5 thoughts on “Wiedemann Steiner Syndrome Parents Network”
Do anyone know if epilepsy is part of weidemann Steiner syndrome. As my daughter who is 14 has weidemann stiener syndrome and was just diagnosed with epilepsy and we are not sure if it is part of the ess.I would be very greatful for any answer that he may have regards Norna Melsop 10lyndon crescent donnybrook Douglas Co Cork Ireland
Thank you for joining us, Norna. As you know, different WSS patients manifest with different symptoms. So one very useful part of joining together as a network is we can compare and learn the common issues our WSS kids (and adults) face — whether they are digestive, neurological, related to hypotonia, etc.
You have been invited into the discussion groups.
Thank you for inviting me to join .Over the pass few months I have met some lovely parents from the group. It’s great not been alone even though each child might have different forms to wss some of them have the same issues as Norna .she is 14.It’s great just to even say hi I know about some of the feelings your are going through or hi how are ye this week .regards Norna
Hello we have just received a diagnosis of Weidemann steiner syndrome for our son through testing that was sent to the university of Chicago . We are in Ottawa, Canada. We are interested in any information or family’s that can help give us information to help our son who is now 4 1/2.
Nucleotide change – c.8543T>C
Amino Acid Change -p.Leu2848Pro
Inheritance- Dominant (de novo)
Hello there 🙂
My name is Barbara Trombello and I am a parent of a child with Kabuki Syndrome.
Recently, there has been a breakthrough in epigenetics and Dr. Hans Bjornsson will be at Sick Kids Toronto on April 27, 2018.
The two syndromes (WSS and Kabuki) overlap and have similarities.
Would you be interested in joining us for a family gathering?
Please contact me at firstname.lastname@example.org if you are interested. We would love to connect!