Tag Archives: research

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.


Step Up! Share the Love!

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.)


Breast Cancer Research {Army of Women}

Breast Cancer Research {Army of Women}

Last week, I wrote my opinion about the Facebook statuses that go around, supposedly for breast cancer awareness. Today, I’m going to write about how YOU can be involved in finding the cause of breast cancer. Do something more than write a Facebook status for breast cancer awareness; YOU can be a part of the cure!

There’s an organization called Army of Women that is trying to gather a million women (and men!) to help find the cause and the cure for breast cancer. They help various research studies around the country find women and men to participate in ground breaking research. (Thank you to all of my readers who have already joined the Army of Women!)

Right now, the Army of Women is looking for women who have had a breast biopsy, but have NOT been diagnosed with breast cancer. Have you had a breast biopsy since January of 2000? You could help this important research! CLICK HERE to read more about this research project.

If you have never had a breast biopsy, you can still join the Army of Women to lend your support to ongoing research.

Not only have I joined the Army of Women, I participated in a research study on young women and breast cancer! It was so easy; all I had to do give a little extra blood at my next doctor’s appointment, and send it off to the research facility! My dad and two sisters were also able to help this research project by sending their blood to this research project, too. It was so thrilling to be able to take part in this important research; research that might help prevent my daughters from someday being diagnosed with breast cancer.

Check out Army of Women today!

I Joined the Army of Women — Now What?

I almost missed the study that was e-mailed to me called “Breast Cancer Risk in Young Women Study.” In fact, I did miss it until my sister forwarded her e-mail to me.  As I read all the study requirements, I realized I qualified!

I clicked the RSVP button: “YES! Sign me up!” and entered my information. Army of Women sent me a detailed email, telling me what to expect. Soon after, I heard from the research coordinator, and she gave me more information.

Do you think I’m nuts when I tell you how excited I felt? Just the thought that my blood would be involved in a breast cancer research study gave me thrills!

I already had made my oncologist’s appointment, and so I was scheduled to have my annual blood test on Monday. My kit arrived in the mail with some forms to sign and two empty vials. Now I began to get nervous. Would the phlebotomist give me a hard time about filling these two extra test tubes? I hoped not.

As I signed into the lab Monday morning, I looked around at the full waiting room. After spending years of waiting in similar rooms at hospitals and doctors’ offices, I could tell who was in the middle of chemo, who was accompanying a loved one for support, who was there for routine blood work like myself. I thought I was the nervous one with my two test tubes in a box, but other people were fidgeting anxiously, waiting for their name to be called. I figured out that the wait was about half an hour. Not bad, considering some of the waits I’ve sat through while seeing certain specialists. Some of those waits were spent shivering in a paper gown while sitting in an exam room–I’d much rather be fully dressed in a waiting room! As much as a veteran as I am at the waiting room game, I forgot to bring a book. It’s a habit I’ve grown out of now that my appointments have stretched out to a year in between visits.

My name was called, and into the lab I went. As I explained to the phlebotomist what I needed her to do, she was very kind and filled my two extra vials with no problem.

As I sent off my package with the FedEx man, I was so glad to be a part of something bigger than me. Being part of a research project goes beyond taking care of myself; I’m doing my part in the future care of women just like me. Women and men just like you.

There are so many neat research studies; from cancer-sniffing dogs to using meditation; Army of Women is helping these studies move forward by finding the right people for the job!

Are you one of them? Join Army of Women at www.armyofwomen.org today to find out!

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Finding the Cause of Breast Cancer: A New Study

After fourteen years, I still wonder how that malignant tumor grew in my breast. I think of the risk factors we know about. Did I smoke? No. Was I overweight? No. Did I drink alcohol? No. Do I have a BRCA gene mutation? No.

I do not know why I got breast cancer when I was only twenty-seven years old.

The main priority of The Army of Women is to find the CAUSE of breast cancer, so we can stop it before it starts! A new research study needs your help! Read on…

Dear Army of Women volunteer,

We have been saying that we need to look in new places for the cause of breast cancer. This study does just that. The researchers are comparing differences between the intestinal bacteria of women who were diagnosed with breast cancer within the last 5 years and those who have never had breast cancer. They are also studying the intestinal bacteria of women who have not been diagnosed with breast cancer and have a first-degree relative (mother, daughter, or sister) WITH breast cancer.

Why are they studying intestinal bacteria to learn about breast cancer? Well, as you may know, exposure to estrogen has been shown to increase breast cancer risk. This estrogen and other female hormones are absorbed through the intestinal tract, and for that absorption to occur bacteria must be present in the intestines. The researchers think that these bacteria and the systems they use to metabolize female hormones may hold clues as to why certain women develop breast cancer and others do not.

Army of Women members have already helped these researchers conduct a study about intestinal bacteria and breast cancer. This is a new study, for which they will collect different types of samples and include more groups of women. If you take part in this study, you will need to provide stool and blood samples and complete a packet of questionnaires. You will also need to live near one of the following locations, or be willing to travel there (at your own expense):

• the Chicago, Illinois metropolitan area
• Northwest Indiana
• Cedar Falls, Davenport, or Des Moines, Iowa
• Minneapolis or St. Cloud, Minnesota
• Southern California (as far north as Kern County and San Luis Obispo)
• Milwaukee, Kenosha, River Falls, or Wauwatosa, Wisconsin.

Sound interesting? Please click here to keep reading and to learn more!

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