Upcoming Events

Rare Disease Day, February 28, 2021

Rare is Many. Rare is Strong. Rare is Proud.

WSS is one of 6,000 rare diseases recognized on Rare Disease Day, which is scheduled on the last day of February each year. The WSS Foundation is sharing our community’s stories during the week leading up to Feb. 28. Visit our “Life with WSS” blog to read about these warriors .

Past Events

Wiedemann-Steiner Syndrome Awareness Day

September 15th is International WSS Awareness Day. This day is set aside to help promote awareness in the public and professional communities. Many individuals choose to create online fundraisers, bake sales, make phone calls, wear their WSS t-shirts and participate in many other methods of fundraisers on this special day. To learn about creative ways you can raise funds on WSS Awareness day, please contact the WSS board of directors.

Fourth Annual WSS Foundation Kids Triathlon

July 10 through September 15th, 2020

This year the kids triathlon is going to be virtual!  


Wiedemann-Steiner Syndrome Foundation International Family Conference 2019

The 2019 International WSS Conference was held in Surgar Land Texas on October 18th – 20th. WSS community families and medical professionals from around the world converged to learn and share their knowledge and experiences. The multi-day event featuree family activities, updates on medical research, the latest therapy techniques and expert presentations to help those diagnosed with WSS to reach their full potential.

WSS Foundation Kids’ Triathlon 2019

On June 9th, the third annual WSS Foundation Kids’ Triathlon was held at Sutter Lawn Tennis Club in Sacramento, CA.

WSS Gathering in England

April 6th, 2019
Coram Fields, Central London

WSS Gathering in Minnesota

March 16th, 2019
Blaine, Minnesota

WSS Gathering in West Virginia

March 2nd, 2019
Wheeling, West Virginia

NORD Summit

Monday, October 15th and Tuesday, October 16th 2018
Washington D.C. (NORD).

Global Genes Rare Patient Advocacy Summit

Wednesday, October 3rd through Friday, October 5th 2018
Irvine, CA.

WSS Clam Boil 2018

On September 15th (WSS Day), there was a fundraiser for the Wiedemann-Steiner Syndrome Foundation held in Bristol, Rhode Island.

Texas WSS Gathering 2018

On August 18th, friends and families gathered at the Saginaw Recreation Center in Saginaw Texas.

Lunch On The Lake For WSS 2018

On August 4th, families and friends gathered for a cruise on the beautiful Bella Vista around Lake Minnetonka, Minnesota in support of the Wiedemann-Steiner Syndrome Foundation.

Cincinnati Ohio Gathering 2018

On July 14th there was a gathering of families and friends at Smale Riverfront Park in Cincinnati, OH.

WSS Foundation Kids’ Triathlon 2018

On June 10th, the second annual WSS Foundation Kids’ Triathlon was held at Sutter Lawn Tennis Club in Sacramento, CA.

Meetup in Germany 2018

On May 12th there was a small gathering of families that met at the FEZ in Berlin.
Click here for photos.

East Coast Regional Get-Together 2018

On April 14th there was a gathering of families and friends at Roger Williams Park Zoo in Providence, RI.

Rare Disease Day 2018

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. For more information visit

WSS UK Families & Beyond Gathering 2018

On February 24th there was a gathering of families at the Thinktank Science Museum in Birmingham, England.

Maryland, Virginia & Washington DC Area Meetup

On January 21st, 2018 families met at Monkey Joe’s in Germantown, MD. 

Fundraising Dinner at Mathús Garðabæjar in Reykjavik, Iceland

On January 20th, 2018 the family of 3 year old Fjola hosted an amazing food & wine fundraiser featuring a 7 course meal and signature cocktails. All proceeds were donated to the WSS Foundation. In attendance were 125 guest including well-known chefs, news reporters,  celebrities and musicians. The family hosted elite chefs and a staff of 30 waiters. It was a fantastic evening and $20,000 was raised for the WSS Foundation!
Click here for photos.

Wiedemann-Steiner Syndrome Conference 2017

The 2017 International WSS Conference was held in Orlando Florida on October 21 & 22. Families from around the world gathered for a picnic together and an outing to a local children’s science center. On the following day, the parents met for a formal conference. During the conference Drs. Wendy Jones, Hans Bjornsson, and Floor Duijkers shared their newest research findings, a representative from CoRDS (Coordination of Rare Diseases at Sanford) shared data from the WSS registry, and parents were given the opportunity to ask specific questions during the breakout sessions. The WSS biennial conferences are organized by the WSS Foundation and the following committee of dedicated parent volunteers: Shannon Gray, Maria Cummings, Megan Mills, Selena Fu, Christina O’Keeffe and Libby Woolford.
Click here for webinar and Powerpoint slides.

International Wiedemann-Steiner Syndrome Awareness Day 2017

September 15, 2017 was our inaugural Wiedemann-Steiner Syndrome Awareness Day. We encouraged our WSS families to wear their t-shirts, hats and hoodies and post photos on social media platforms to promote awareness. Additionally, our members hosted an online campaign to raise funds for WSS research. Through the commitment and tenacity of our community we raised over $14,000 in one day! These funds are allocated toward the creation of grants for WSS researchers.

UK Family Gathering 2017

On August 26, 2017 Alison Sharpe organized a fantastic event at Twycross Zoo for WSS families in the UK. As Alison explained, “There was an instant bond among all the children and young people. It was truly amazing to see. The parents were relaxed and nobody judged. It was a perfect day for everyone to gather, share stories and be in a place of complete acceptance”.  Dr. Wendy Jones, one of the country’s leading researchers, was also in attendance and available to meet with the children and answer questions. Alison further shared, “I think after speaking to other parents, I certainly learnt more that way, about WSS, education, the future. The thanks and feed back I received from parents and our warriors made all the organisation of the event worthwhile”.  Alison plans to make this gathering a bi-annual event!
Click here for photos.

WSS Kids Triathlon 2017

On July 11th, 2017 the inaugural WSS Foundation Kids Triathlon was held in Sacramento, California. The event was organized by Libby Woolford and hosted by the Sutter Lawn Swim & Tennis Club. Over 80 children participated raising over $9,000 for genetics research.
Click here for photos.
Read about the event in the Heart of East Sac.

Stillwater Half Marathon for WSS Foundation 2017

On May 27th, 2017 Nicole Schumann participated in the Stillwater, Minnesota half marathon raising over $25,000 for the Wiedemann-Steiner Syndrome Foundation to be used toward genetics research.
Click here for photos.

Stuart Family Bake Sale 2017

On May 14th, three twelve year old girls from Santa Barbara, CA raised money for the WSS Foundation in honor of their brother and friend with WSS. The girls plan to make this a yearly event.
Click here for photos.

Jersey Mike’s Subs in Redding, CA

The week of February 20th, 2017, Jersey Mike’s Subs in Redding CA offered free sub sandwiches to anyone who brought in a sub card distributed by a WSS Family that resides in Redding. Jersey Mike’s Subs requested a minimum $3 donation from each card holder. The WSS Foundation sincerely appreciates the support of Jersey Mike’s Subs in Redding as well as the support of those patrons who donated.

Northern California Family Gathering 2016

Four California families gathered in Sacramento, California in May. The families enjoyed an outing to Sky High sports where the kids were able to get in lots of trampoline time followed by a family dinner. The next day, Dr. Wendy Jones and Dr. Bilur Moghadam, a local geneticist in Sacramento that has diagnosed multiple children with WSS, spent the morning updating families on the latest WSS research.

Wiedemann-Steiner Syndrome Conference 2015

About fifteen families from across the US and one family from Ireland gathered in Baltimore in the summer of 2015. The first day, families did a group outing to the National Aquarium and participated in a group dinner where Dr. Wendy Jones and Dr. Hans Bjornsson of John’s Hopkins University did a presentation on WSS. On the following day, Dr. Jackie Weisman presented on neurodevelopment, Dr. Hans Bjornsson, Dr. Wendy Jones, and Dr. Reymundo Lozano participated in a question and answer session, and each family was seen individually by Jackie Weisman and then by Dr. Hans Bjornsson, Dr. Wendy Jones, and Dr. Reymundo Lozano. It was an incredible opportunity for the families to spend time with one another, learning from one another and creating lifelong bonds. The doctors couldn’t have been kinder, more genuine people, taking a sincere, pro-active interest in creating meaningful relationships with and helping the children/families. All of the families came away with so much more than they could’ve imagined the weekend would bring.