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30% of children with rare diseases don't live to see their 5th birthday.

History and Mission

In 2012, Doug Passow, the creator of the Gene Giraffe Project, witnessed his niece Ava who was born with a rare disease called GM1 gangliosidosis die at age 3 after battling this rare disease. GM1 gangliosidosis is a rare lysosomal storage disease that progressively attacks the neurons in the brain and spinal cord until death by the age of 2 or 3. At 6 months old, Ava progressively lost her ability to crawl, talk, and move and was diagnosed with GM1 at age 1. Due to the late diagnosis, the disease had progressed too much to provide any treatment other than palliative care until her passing. In 2017, his nephew Jackson was diagnosed with the same disease and around 45 days old he was the youngest person in University of Minnesota Children's Hospital to undergo a bone marrow transplant. Jackson's procedure was a success as he regained enzyme function but sadly also passed from GM1 at age 2. 

Gene Giraffe Project was created in 2012 on a promise from Doug Passow to Ava that he would create something that would give back to those people that helped the families of rare diseased children as there was no resources available when Ava was alive.

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Gene Giraffe Project is a 501c3 public charity created in 2012 that raises awareness and funds for rare diseased children and their families. Gene Giraffe Project helps families that endure long hospital visits due to rare diseases through gas cards, personalized care packages for rare diseased children, family support services, donations for equipment improvements, and many other avenues. 

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Lastly, the Project also utilizes the Ava and Jackson Passow Scholarship Fund that gives away up to 6 scholarships a year to local students in the Fort Dodge, and Manson Northwest Webster school districts that are headed to college in the nursing, social services or STEM fields.

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Office Location:    206 2nd Street 

                             Clare, Iowa 50524

Phone Number:  515-571-0228

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