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!
"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:
Do you have a talent for writing or photography? Like to plan meetings and events? Are you crafty or bilingual? Do you have professional skills to share? Would you love to encourage other families?
Your skills and talents can make a big difference. Here are a few ideas:
Let us know how you'd like to help!
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 Recurring Donor. Recurring 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 reachingout@wagr.org.
Community grants and private foundations support non profit organizations, their events, and mission. To apply for funding related to these opportunities, contact the IWSA at reachingout@wagr.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 Day 2020.
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.
For more information or if you have questions about how to fundraise for the IWSA, contact the IWSA at reachingout@wagr.org.
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