Conference in Grand Rapids will educate families impacted by Huntington’s Disease

Posted at 8:51 AM, May 16, 2017
and last updated 2017-05-16 08:51:26-04

GRAND RAPIDS, Mich. -- Mary Lockrow lost her sister to Huntington's disease last year. Now she's honoring her sister through advocacy, supporting a local conference that's all about the disease.

Huntington's disease is a progressive neurological condition that is inherited from parent to child. It deteriorates a person's physical and mental abilities, any parent with Huntington's has a 50-50 chance of passing the gene to their children.

We're told having Huntington's is basically a combination of ALS, Alzheimer's and Parkinson's disease.

Mary has it, and so does her late sister, Susan, and her mother. She says it impacts everyone differently. Her mother is 89 and still living, but her sister passed away just last year.

"We were a very close family," Mary said. "You kind of have to process it and appreciate life and also become an advocate for Huntington's disease, so we can eradicate this disease."

The conference is called Integrating Art with Science to Advance Clinical Treatments for Huntington's Disease.

Topics will include genetic testing, rehabilitation treatments, the role of advocacy and how to access clinical trials.

At the conference, art by Mary's late sister will be on display. She has another sister, Maureen, who will read her poetry. In addition, genetic counselors, physical therapist and speech pathologist will be there.

Attendees will hear from keynote speaker, Dr. Jeff Carroll, a scientific researcher of Huntington's disease. His family's story was featured in the documentary, "Do You Really Want To Know?"

The conference is May 22 from 4:00 to 8:00 p.m. at Watermark Country Club, 5500 Cascade Rd SE.

Deadline for registration is Wednesday, May 17. The cost is $10 per person. To register, click here.

For additional information or assistance contact Kathleen Delp at 616.391.8664 or by email.