Jennifer is 34 years old and was diagnosed in 1999 with Mucolipidosis, (ML) Type III. The road to diagnosis was difficult as Jennifer didn’t present symptoms early on in childhood. Doctors had misdiagnosed Jennifer for 1-1/2 years with another disorder.
Today, Jennifer is beating the odds! She is thriving as a Patient Scientist working in rare disease research. She has had multiple surgeries for her back, lungs, and hip replacements. Through all of this adversity she remains active in exercise, hiking, traveling, work and with her husband and three dogs.
Together, our family’s goal is to raise awareness and funds for the National MPS Society. The Society supports research for MPS and related diseases, this includes Mucolipidosis. It is critical we raise funds to develop a treatment for those suffering. There are treatments for some of the MPS diseases that are similar to Jennifer, but no breakthroughs yet for hers.
For years Jennifer has shared that “No, is not an option.” Today Mucolipidosis is beginning to see the first real breakthroughs in research that will lead to a gene therapy. Funding is critical now for ML research through our Challenge Grant. Our goal is to raise a first tier of $500,000 to fund Dr. Patricia Dickson, Washington University that will work to run studies and build the first gene therapy delivery for ML.
International MPS Awareness Day is May 15th. We have updated this page in her honor.
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The Klein Family
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