WAGR Awareness Day 2025

Donate by Mail

Make checks payable to the IWSA

International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886

Matching Gift

Check with your employer to enroll in a program.

IWSA US Tax ID

20194769

Donate by Credit Card

Donate by Paypal

Donate by Digital Wallet

Donate by Just Giving

Donate to our European Bank Account

The IWSA now has a bank account in Europe.

IWSA Europe FV

IBAN: BE76 7310 6952 2295

BIC: KREDBEBB

Walk with us for WAGR

Join families around the world to raise awareness of WAGR and raise funds for the organization that supports the individuals and families affected by this rare disorder.

WAGR Awareness Day is the IWSA’s largest fundraiser of the year and your help is needed!

This year our group fundraiser “WALK WITH US FOR WAGR” is a great opportunity to share your story with your community. Your participation will help shine a light on WAGR syndrome and support children and families worldwide.

Be Creative. Host your own Walk

Create an event that works best for your and your community
Ask each participant to donate, either directly to you or share our link/QR code and encourage your walkers to donate
Organize a group walk in your neighborhood
Coordinate with your local school and walk laps around the track
Design a walk through a local park or on hiking trails
Create a team and give it a name (ex: “Team Amy–Walk with us for WAGR”) and let us know that you have an event scheduled. We will post team names and countries where the teams will walk. (email linda.vandesande@wagr.org or shari.krantz@wagr.org)
Walk with your family, share the reason why, and ask your community for support through donations

Examples of Possible Events

Team Amy–Shari Krantz, Maryland, USA. Make fliers and put in neighborhood mailboxes inviting people to join me on November 8 to walk our neighborhood to share my story and raise funds for the IWSA. I will have a donation jar at my driveway when we start the walk and also include the link and QR codes for donations on my flier. After the walk, I am inviting my neighbors and friends to my home for coffee, hot chocolate, and cookies. I will share my story about Amy’s WAGR journey and talk about my work with the IWSA and our special families around the world.

Team Dylan–Linda van de Sande, Belgium. Create an event on September 7 and invite people to walk together with Dylan (hiking trail of 5 km). Advertise this event and ask people to sign up through a google form. Fixed participation fee of 10 euros. This includes the walk and a cup of soup after the walk. This will be served at our house. We’ll have some additional drinks and snacks for sale to raise more money. All participants will receive a small gadget (pin, bracelet, …) for their participation. There will also be a possibility for family and friends to attend virtually. They will walk in their own area or country and donate money. These supporters will receive a virtual award for their participation. All the money will be collected by me and I will make a one time transfer to the IWSA account.

Walk with us for WAGR - Teams

Every step, every donation to the IWSA helps provide hope and support for individuals with WAGR and their families.

Big thank you to the following teams who have signed up to Walk for WAGR 2025!

Team Amy - Maryland, USA

Team Dylan - Belgium

Walk with us for WAGR - Photos

Please submit your team photos to share with our community (email linda.vandesande@wagr.org or shari.krantz@wagr.org)

What is WAGR Awareness Day?

"WAGR Awareness Day" is one day a year dedicated to increasing international understanding of:

What WAGR syndrome is
What it means to love someone with WAGR syndrome
How people with WAGR syndrome play a vital role in our lives, our schools, and in our communities

WAGR Awareness Day is also the IWSA's largest fundraiser of the year. Donations and community support are crucial to helping the organization to continue pursuing its mission. WAGR Awareness Day is the opportunity for everyone to show their support and generosity.

The first WAGR Awareness Day was held on November 13, 2017. Since then, this annual event has continued to grow.

When is WAGR Awareness Day?

WAGR syndrome is caused by a genetic deletion that involves Chromosome 11p13 . All individuals with WAGR syndrome share a common segment of deleted genes that includes the WT1 (Wilms tumor) gene, and the PAX6 (Aniridia) gene, as well as the genes that lie between these two.

In recognition of the location of this genetic deletion, WAGR Awareness Day is celebrated each year on November 13th.

Information Sheets

Aniridia

Kidney Health

Patient Registry

Scoliosis

Wilms Tumor

Facts About WAGR Syndrome

A disorder is considered "rare" if it affects fewer than 200,000 people in the US (or 1 in 2,000 people in Europe). WAGR syndrome affects fewer than 500 people worldwide and is considered an "ultra-rare" disorder
Rare disorders like WAGR syndrome are important because they are key to unlocking the mysteries of more common conditions. For example: People with WAGR syndrome often have obesity caused by a mutation in the BDNF gene. Studying this gene could help lead to new treatments for obesity

50% of children with WAGR syndrome develop Wilms tumor, a type of cancer of the kidney
Nearly all children with WAGR syndrome are born with Aniridia, a condition in which there is no iris (the colored part) in the eye. Most people with Aniridia have some vision, but have a high risk for conditions like cataracts, glaucoma, and other eye problems that can cause blindness

Chronic kidney failure occurs in approximately 60% of people with WAGR syndrome. Early diagnosis and prompt treatment are critical, and can delay the need for dialysis or kidney transplant
50-70% of people with WAGR syndrome have disorders of movement or muscle tone

Learn More

How to Participate in WAGR Awareness Day

WAGR Awareness Day is a unique opportunity to share information about WAGR syndrome and how the IWSA supports individuals and families affected by the rare disorder. This is a great way to show your support--encourage family members, friends, coworkers, and others in your community to donate to the IWSA.

Tell Your IWSA Story

One of the best ways you can participate is by sharing how WAGR syndrome and the IWSA has impacted your journey. Your community will be most impacted by hearing directly from you!

Create a Facebook Fundraiser

Help make it easier for your community to donate to the IWSA by creating your own Facebook fundraiser. It is very easy to set up and your community will feel great knowing they are supporting YOU through their IWSA contributions!

Share IWSA Posts

The IWSA will be sharing information throughout the WAGR Awareness Day on the public Facebook and Instagram pages. Please follow and share these posts with your networks!

Why Support the IWSA

Better medical care. Powerful research. Family support that makes a real and lasting difference in the lives of kids and adults with WAGR syndrome.

When you support the IWSA, you make ALL of these happen!