More than twenty years ago, a handful of parents joined together to support one another, create awareness, and to learn about the conditions associated with WAGR syndrome. Those
families and their dedication were the beginning of the International WAGR Syndrome Association.
Today, the IWSA continues to depend on the talents, commitment, and enthusiasm of parents, families, and friends around the world. Whether your passion is raising awareness, facilitating
research, or supporting families, there's a place for you on the team.
Join the IWSA team of volunteers today, and help make the future brighter for kids and adults with WAGR syndrome!
Share your Story
"What is WAGR syndrome? I've never heard of it."
Most families caring for an individual with WAGR syndrome have been asked this question over and over again. By answering this question, you are already doing your part to promote
awareness. You can also share your personal story, including the challenges and achievements of caring for an individual with WAGR syndrome. There are many simple ways to promote
awareness that require minimal effort and commitment, including:
The IWSA relies on the generosity of individual donors, corporate donor matching programs, private foundations, and fundraising and awareness events hosted by IWSA families and friends.
Donating to the IWSA is tax deductible and directly benefits member families through programs, events, and information. Single donations are welcome and appreciated. To have even
more impact, become an IWSA Monthly Donor. Monthly donations help with planning and forecasting.
Many companies around the world offer Employer Match programs. If you donate to the IWSA, your employer may offer a match or percentage to
increase your generosity. If you need assistance determining if you can participate in a program like this, check with your employee benefits administrator or email the IWSA at
Communitygrants and privatefoundations support non profit organizations, their events, and mission. To apply for funding
related to these opportunities, contact the IWSA at firstname.lastname@example.org IWSA representatives are available to help navigate the paperwork to maximum all opportunities.
There are infinite ways to raise funds for the IWSA. Many are simple and require minimal time, while others involve planning and coordination. IWSA families around the world are
creative and enthusiastic, and their efforts are encouraged and greatly appreciated.
Participating in the IWSA's annual WAGR Awareness Day, November 13, is a great way to share your story, raise awareness, AND to raise funds. The IWSA posts a Tool Kit
each Fall to help families be part of and maximum donation opportunities on this exciting day. WAGR Awareness Day is the organization's single largest fundraiser of the year.
Creating Facebook fundraisers is a simple and effective way for families to get involved. Setting up a birthday fundraiser takes a couple of minutes and can reach your
family and friends around the world.
In the United Kingdom, recent fundraising events range from a Netball Tournament hosted by Lizzie Pullen to a home shopping and tea party hosted by
Susan Wilkinson. Funds raised by these families helped finance WAGR Weekend activities in the UK.
In Belgium, raising awareness and funds are important goals for Linda van de Sande. Linda created a unique fundraising event, called "Be My Sunshine", to coincide with Rare Disease
In the United States, events include the Harris family's annual tshirt fundraiser on Rare Disease Day; the IWSA annual Popcorn fundraiser led by
Courtney Collette and family; community events like golf tournaments and dinner dances; and raffles at WAGR Weekend.
The options are limitless. Fundraising is a great opportunity to share your story, engage your community, and educate others about rare diseases and the challenges faced by families
affected by them.