A Research Opportunity

A couple of weeks ago, Lily and Emmy were able to volunteer for a research project. This research, through Rush University Medical Center, is to help fight a rare neurological disease called Niemann-Pick Type C. Lily and Emmy were part of a control group of normal, healthy children. The researchers attached sensors to several places on the girls’ bodies to measure their gait and movements. By measuring how a typical child moves, they hope to see how an experimental drug for Nieman-Pick disease is working with children who have this rare disease. The researcher that worked with us told me that there is a lot of information about how a typical adult moves, but there is not as much information about the movements of children.

Emmy research
Emmy has sensors around her feet, wrists, waist and shoulders.

By measuring how much typical children sway as they walk, how fast they walk, how much they move when standing still and other information, will help researchers to know what is normal movement for children of different ages. This information will be compared to the movements of children with Niemann-Pick C disease.

Specifically, we hope this research will help Hayley, a young girl who lives in our area. She was diagnosed with Niemann-Pick when she was 11. We don’t know Hayley personally, but we learned more about her condition in an article featuring her in the Chicago Tribune.

Hayley has a rare genetic disorder called Niemann-Pick Disease Type C, often dubbed childhood Alzheimer’s because its symptoms are similar to those of adult dementia, though it’s not the same disease. Memory, speech and mobility fade. It gets harder to eat and drink unaided. There is no treatment approved by the Food and Drug Administration, and young children with the disorder typically don’t live past their teens. Chicago Tribune, February 8, 2016 Read more here.

Lily research
Lily standing still, with the sensors measuring how much she sways while she stands.

During the weekend of research (which was hosted by our church), information was collected from 40 children! It was such an easy thing for these kids to give up some of their time to help others. Not only that, but I think the kids had fun participating in scientific research. It was a great experience, and I hope it will be beneficial to Hayley and other children with Niemann-Pick Type C.

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Step Up! Share the Love!

A few years ago, I had just returned back to school after winter break. I was in my classroom, preparing for class, when I got a phone call. It was a good friend of mine. She had lost my home phone number, but she knew I would be back at school that day. When she told me her news, I burst into tears. She was barely 30 years old and had just been diagnosed with breast cancer.

Last summer, I ran into a friend of my sister-in-law’s at a funeral. I looked at her short, curly hair, finally growing back after chemo. This mother of two, in her 40’s, told me how relieved she would feel if she could just reach the five year survival anniversary. Five years. I smiled and agreed. Inwardly, I cringed, thinking that the fear of cancer recurrence never goes away. Not after five years. Not even after fifteen years.

Just last week, something happened that made me tearfully collapse in my husband’s arms. “It’s not fair!” I wailed. “I’m the one who had cancer. I’m the one who had needles poked into my arms for chemo. It’s not fair!”

Yes, even fifteen years after my diagnosis of breast cancer, I still have a self-pity party every once in a while.

The three of us have survived breast cancer, even though we were diagnosed young. However, the breast cancer community online was shocked by the loss of two young women who had been fighting metastatic breast cancer. Rachel, author of The Cancer Culture Chronicles and Susan, of Toddler Planet, both passed away on Monday, Feb. 6, 2012. While I never met them, I read their blogs and am so saddened by their loss.

I’ve been praying a lot these days. Amy, the Matron Down Under, just discovered she has breast cancer, and she is only 35. Her sister Becky (Suburban Matron) had her own fight with breast cancer two years ago. I just don’t understand why so many of us are diagnosed with breast cancer at such a young age.

 

Today, for Valentine’s Day, Dr. Love/Avon’s Army of Women is going to Share the Love to help further breast cancer research. LOVE Goes Beyond a Cure, and So Do I! Below is a video I made in October which answers the question, “When did you know breast cancer was going to change your life?” Since this video was made, I also was able to join  a breast cancer research study. What a great feeling! (If you are reading this post in your email or a reader, you may have to click to Lemon Drop Pie to watch the video.)

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