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Rare Disease Day occurs on the last day in February each year to promote awareness amongst the public and decision-makers about rare diseases and their impact on patients' and families' lives.

Our son Joshua is impacted by a rare disease, WAGR Syndrome.  In fact, it is so rare, it happens in about 1 in 1 million births and is caused by a section of missing genes on Chromosome 11.       

People with WAGR syndrome face many challenges but can live happy and productive lives.  Wilms tumor is a rare childhood kidney cancer. Fifty percent of individuals with WAGR syndrome will develop this cancer.  Aniridia is a rare eye condition that causes low vision and can cause blindness, cataracts, glaucoma, and corneal problems.  Genitourinary abnormalities occur in both boys and girls and may include undescended testicles or abnormalities of the penis, ovaries, or uterus.  Range of development delays may involve intellectual disability, learning difficulties, and behavioral challenges. 

Joshua is no stranger to challenges.  Indeed, ten of his nineteen surgeries occurred before the age of 3. He continues to battle with Glaucoma and Scoliosis, but he is always determined in all he does each day, especially putting a smile on the face of everyone he meets.  In addition, he gives lasting hugs and makes an indelible impact at every journey.

IWSA, International WAGR Syndrome Association, promotes awareness, stimulates research, and supports families.  Further, it is their desire to celebrate the joy, love, & courage our loved ones with WAGR/11P deletions give us.  

By donating to the IWSA, you can feel the hope and share in the pride. 

Now YOU are "one in a million" too! Thank you for making a difference!