East Coast Regional Get-Together
Saturday April 14th, 2018
Roger Williams Park Zoo
1000 Elmwood Ave, Providence, RI 02907
Dinner to follow for those interested at a local restaurant. Discount tickets to zoo being offered but must be ordered in advance. For more information, please contact Shannon Gray.
WSS Foundation Kids’ Triathalon
Saturday June 10th, 2018
Sutter Lawn Tennis Club
3951 N Street, Sacramento CA
For more information, please contact Libby Wolford.
Click here to download registration packet.
Click here to download sponsorship information form.
Lunch On The Lake For WSS
Saturday, August 4th, 2018, 10:00 a.m. – 12:30 p.m.
Lake Minnetonka, Minnesota
Come and join us for lunch aboard the beautiful Bella Vista on Lake Minnetonka in support of the Wiedemann-Steiner Syndrome Foundation. Tickets are limited to 100 guests so get yours today! Tickets are $100 each for guests 1 and up ($45 of the ticket price is tax deductible). Please email Maria Cummings to reserve your tickets.
Wiedemann-Steiner Syndrome Awareness Day
September 15th, 2018
September 15th is International WSS Awareness Day. This day is set aside to help promote awareness in the public and professional communities. May 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.
Global Genes Rare Patient Advocacy Summit
Wednesday, October 3rd through Friday, October 5th 2018
Contact Global Genes.
Monday, October 15th and Tuesday, October 16th 2018
Washington D.C. (NORD).
Tuesday, November 27th, 2018
Contact WSS Foundation board of directors for more information about how you can encourage your network to choose the WSS Foundation as their benefiting charity.
Wiedemann-Steiner Syndrome Conference 2019
The WSS Foundation and a committee of parents will be organizing the International WSS Conference in Houston, Texas to coincide with the American Society of Human Genetics (ASHG) Conference. Information about this conference will be made available to WSS parents on this website and through the WSS Facebook Groups.
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
On January 21st, 2018 families met at Monkey Joe’s in Germantown, MD.
Fundraising Dinner at Mathús Garðabæjar in Reykjavik, Iceland
Was held on January 20th, 2018.
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.