Events

FEATURED EVENT:

Wiedemann-Steiner Syndrome Foundation International Family Conference

October 27-29, 2022
Baltimore, Maryland USA 

The 2022 International WSS Family Conference was held in Baltimore, Maryland USA at Turf Valley Resort (in Ellicott City). 

The largest gathering of WSS patients and their families featured opportunities to share and learn from each other through shared knowledge and lived experiences. The multi-day event included family activities, research engagement, education on medical treatments and therapy techniques, and expert presentations. View the recordings of the presentations on the WSS Foundation’s YouTube channel

The next International WSS Family Conference is scheduled for 2024 (location to be determined). For more information or to join the planning committee, please contact us at info@wssfoundation.org.  

Recent Events

Launch of the International WSS Data Collection Program, beginning September 1 

Join us in harnessing the power of your data for your loved one with WSS to accelerate reserach and medical knowledge on Wiedemann-Steiner Syndrome. This new program is a registry of individuals diagnosed with WSS and features essential information on WSS characteristics and symptoms. It is powered by RARE-X, a not-for-profit organization with expertise in survey development and management aligned with drug development requirements for new treatments. A virtual webinar will kick-off this new program scheduled for Sept 1 at 8am PDT / 11 am EDT / 4 pm BST. Learn more and register today – Click Here!

Wiedemann-Steiner Syndrome Awareness Day, September 15, 2022

September 15th is International WSS Awareness Day. This day is recognized by the global WSS community 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.

Past Events

 

Rare Disease Day 2022

February 28, 2022 is Rare Disease Day. 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 for the last day in 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.

September 15th is International WSS Awareness Day (#WSSday).

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. More information about our 2021 #WSSday activities are coming soon.

5th Annual WSS Foundation Kids Triathlon, September 12, 2021

The WSS Foundation Kids Triathlon is one of our most favorite days of the year and has become a beloved community tradition. Given the circumstances surrounding COVID-19 and with the health of our participants and their family’s being of the utmost importance, we held last year’s event virtually and will be presenting a hybrid of sorts this year. Dependent on your family’s comfort level in participating in-person due to COVID-19, participants of this year’s triathlon can participate in person or participate virtually. Learn more about the event here.

Columbus Summer Meet-up, August 14, 2021

The WSS Foundation is hosting a casual gathering of WSS families at the Columbus Zoo and Aquarium. Fun for all ages. Tickets and parking provided at no cost. Find out more information and register by visiting the WSS Parent Support Group on Facebook.

Rare Disease Day 2021

 February 28, 2021 is Rare Disease Day. 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 for the last day in 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.

Wiedemann-Steiner Syndrome Awareness Day 2020

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.

4th Annual WSS Foundation Kids Triathlon 2020

July 10 through September 15th, 2020 – This year the kids triathlon is going to be virtual! 

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 2019

April 6th, 2019 Coram Fields, Central London

WSS Gathering in Minnesota 2019

March 16th, 2019 Blaine, Minnesota

WSS Gathering in West Virginia 2019

 March 2nd, 2019 Wheeling, West Virginia

 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 www.rarediseaseday.org.

 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 2018

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

INTERNATIONAL FAMILY CONFERENCES

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.

2017

The 2019 International WSS Conference was held in Orlando, Florida USA on October 21 & 22. Families from around the world gatherd for a picnic together and an outing to a local children’s science center. On the following day, parents met for a formal conference featuring Drs. Wendy Jones, Hans Bjornsson, and Flor Duikes, who shared their latest research findings. In addition, data from the patient registry was provided. Parents were given ample time to ask questions during breakout sessions with experts and each other. Appreciation to the dedicated volunteers: Shannon Gray, Maria Cummings, Megan Mills, Selena Fu, Christina O’Keeffe, Ryan O’Keeffe, and Libby Woolford. 

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.