Students to raise awareness of rare genetic disorders at Willow Canaan’s fifth-birthday celebration

Biology and anatomy & physiology students from Mississippi Gulf Coast Community College’s Jackson County Campus will participate in Willow Canaan’s fifth-birthday celebration at Lynn Meadows Discovery Center in Gulfport on Saturday, October 6.  From 9:30 – 11:30 a.m., guests will celebrate this special day with Canaan, who was diagnosed in 2016 with the rare terminal genetic condition Multiple Sulfatase Deficiency (MSD).

The MGCCC students will set up science-activity centers during the celebration to help guests understand MSD and other genetic conditions.  Activities will include making gene bracelets that symbolize the role genes play in conditions like MSD and rub-on tattoos with unique designs.  Lynn Zimmerman, the MGCCC biology instructor spearheading an annual gene fair at the Jackson County Campus, will also give a short genetics demonstration that highlights the uniqueness and value of each individual, which is one of the goals of this event.

“Each semester, our science students participate in a gene fair, displaying artistic representations, along with research, on a variety of genetic disorders,” Zimmerman said. “Willow and her mother, Amber Olsen, have been our guests during these activities, and Amber has been a guest speaker to our classes.  We are excited about participating in the birthday celebration and having the opportunity to demonstrate the importance of gene research to find a cure for conditions like MSD.”

Zimmerman said that students have also been involved in raising funds to move a treatment (gene therapy) that looks promising for MSD patients from the lab to human trials.

“While our students know that MSD is a rare genetic disorder that currently has no cure, seeing the effects of such a disease in this innocent little girl has been life-changing,” Zimmerman said.   “Hearing that just a year or so ago Willow was running around and interacting with her sisters and parents and now seeing her confined to a small wheelchair is heartbreaking.  The good news is, and our students are so encouraged and excited to learn, that the FDA just approved the next phase of testing MSD gene therapy in the lab and then it will hopefully go to human trails next year! Funds are still needed to get it there but knowing the possible cure is right around the corner is so exciting for Willow and her family!”

The public is welcome to attend the birthday celebration.  Purchase tickets by October 1 at willowturns5.eventbrite.com or call (228) 447-4820 for additional information.

Proceeds from this event will go toward helping #curemsd.  For more information about MSD and the efforts toward a cure, visit curemsd.org.

 

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