Tag Archives: Alzheimer’s

The Story within a “Novel” Biology Class


We are pleased to republish geneticist Megan Rokop’s account of how she uses The Story Within:Personal Essays on Genetics and Identity to teach her introduction to biology course.  This article originally appeared in the September issue of MIT STEM Pals, a newsletter sponsored by the MIT BLOSSOMS Program.  At the end of this post, several The Story Within contributors share their experiences in interviews and blog posts.

Guest post by Megan Rokop

Most intro biology courses get to a point where the focus turns to human systems, and the classes become more or less “an organ each day,” which involves teaching students about the proper anatomy and function of one organ at a time. Another approach—one I will describe below—takes the opposite standpoint, and starts by describing what can go wrong.

Geneticists like myself get their kicks from studying what goes wrong with the human body in order to learn about what could have been going right, so we are naturally drawn to teaching from this perspective. Students (and all humans) are inherently interested in themselves, and thus their curiosity is often most piqued by what may one day “go wrong” in themselves or their friends and family members. For this reason, the standard attention-grabbers in biology class include cancer, Alzheimer’s, diabetes, etc. As teachers, we can capitalize on what grabs students’ attention, and use these conditions in order to introduce fundamental topics such as cell division, nerve cell signaling, the function of the pancreas, and so forth.

Earlier this year, I happened upon a new book, The Story Within, edited by acclaimed memoirist Amy Boesky (author of What We Have). The Story Within is a collection of 16 short non-fiction essays, each written by a different author. These authors span various ages, careers, and perspectives, but they all share one thing: either they, their parents, or their children are affected with a severe genetic disorder. Some of them have symptoms of these genetic disorders, and others do not. Some have chosen to get their DNA tested, and others have not. Some have decided to have children, and others have not. Each person recounts the choices they have made because of the disorder that affects them and their families.

The book is unlike any other book I have encountered, and it is exceptionally powerful. I was so taken by it that I decided to devote 1/3 of my biology class this semester to teaching biology concepts in the order they arise in this book. In preparation for each class period, the students read two chapters of the book. From reading the chapters, they became aware of the personal struggles of someone with a certain condition, and they clearly felt strong emotional connections to the writers and their stories.

Then, during class time, the central theme we discuss is how the disorder results because of a certain kind of mutation in a certain gene, how that mutation changes a protein product, how that protein’s function is altered, how that altered function impacts a certain cell type and thus organ function, and how that produces the symptoms of the disorder. We also talk each day about how the specific type of mutation in the gene correlates to the mode of inheritance of the disorder (i.e. dominant or recessive, X-linked or autosomal). Thus we span many levels of biology (molecules, organelles, cells, tissues, and organs) in every class.

Using this book has led us to discuss a variety of topics, from central concepts of molecular biology, to organelle function, organ function, and bioethics:

  • Through discussions of Huntington’s, Alzheimer’s, and schizophrenia, we have covered the brain and nerve signaling, and also the implications of choosing to get one’s DNA tested.
  • Through discussions of breast cancer, we have covered the cell cycle and DNA repair.
  • Through discussions of cystic fibrosis, we have covered the lungs, ion channels, and organ transplants.
  • Through discussions of Duchenne’s Muscular Dystrophy and hypertrophic cardiomyopathy, we have covered skeletal and cardiac muscle function and cytoskeleton and extra-cellular matrix proteins.
  • Through discussions of hereditary blindness (due to retinitis pigmentosa), we have covered photoreceptors and the retina.
  • Through discussions of hereditary deafness, we have covered the inner ear, and how gap junctions allow molecules to move between cells.
  • Through discussions of Fanconi’s Anemia, we have covered the blood, bone marrow transplants, and IVF and PGD (pre-implantation genetic diagnosis).
  • Through discussions of Fragile X, we have covered X-linked traits and pedigree analysis.
  • Through discussions of Tay Sachs, we have covered the role of lysosomes and the implications of prenatal DNA testing.

In this way, we have spanned the brain, lungs, heart, eyes, ears, blood, muscle and more, all through the attention-grabbing biographical accounts of the authors, filmmakers, advocates, genetic counselors, and others who wrote the chapters of this marvelous book.

If you would like to chat more about any of the readings, in-class activities, or assignments I am using in this class (which I entitled “Learning Biology through Reading Fiction and Non-fiction”), feel free to contact me at <rokop@alum.mit.edu>.

Megan Rokop is the Associate Director of the Honors College at UMass Boston, where she is a biology faculty member, and she is trained as a microbial geneticist.

Listen to a BBC interview with Amy Boesky and several contributors to The Story Within here.

Amy Boesky’s blog post “On Collecting” can be found here.

Read essayist Patrick Tracey’s account of the symposium attended by the book’s contributors here.

Praise for The Story Within:

boesky“This unique collection by a star cast of authors meditates on the complex relationship between identity and genetics. The essays are innovative literary engagements with the difficult philosophical and emotional issues raised by particular genetic inheritances. The authors cover a variety of genetic conditions, with varying levels and kinds of genetic risks and potential medical interventions, ranging from hereditary breast cancer to Huntington’s disease and more.”—Alexandra Stern, University of Michigan, author of Telling Genes: The Story of Genetic Counseling in America


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by | November 21, 2014 · 8:30 am

The 36-Hour Day Podcast: suggestions for caregivers

Today is the fourth in a series of brief podcast excerpts from The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. This bestselling title by Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H., is in its fifth edition and is now available in an audio edition.

In this excerpt from Chapter 3, Dr. Rabins offers practical advice and addresses some common frustrations for caregivers, such as solving one problem at a time to avoid feeling overwhelmed, relying on common sense and creativity, and sticking to a predictable schedule. Dr. Rabins emphasizes the importance of getting enough rest and “caring for the caregiver.” Dr. Rabins explains the latest medical understanding of dementia. He describes the types of dementia, when and how the condition progresses, and how diagnosis determines treatment options.

You can find this podcast and the rest of the series of podcasts here.


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Filed under Consumer Health, Dementia and Memory Loss, Geriatrics and Gerontology, Health and Medicine, Mental Health, Public Health

Alzheimer’s Action Day

Guest post by Laura Wayman

To bring attention to this widespread and incurable disease, the Alzheimer’s Association has chosen September 21st as Alzheimer’s Action Day. It asks everyone to wear purple to show their support for the search to find a cure. 

Alzheimer’s is the equivalent of a Category 5 hurricane that is barreling towards us, destined to leave a path of emotional and financial destruction, and poised to bankrupt our healthcare system. While the number of people living with Alzheimer’s continues to grow, last year was an eventful year for research and funding related to the disease. Although no scientific breakthroughs have yet occurred, with perseverance, support, and, most of all, hope, I still believe that a cure can and will be found.

However, at this stage we still have no way to stop, prevent, or cure Alzheimer’s, leaving us with the fact that today we can only focus more on positively affecting how people live with it.

Dementia care exacts an immense toll on both the one diagnosed as well as the one who is thrust into the care giving role. Family members caring for loved one with any dementia often lack the time, knowledge, and resources to help in meeting the overwhelming daily challenges along this roller coaster ride I call the dementia care journey.

And so this Saturday, September 21, 2013, on Alzheimer’s Action Day, I encourage you to take individual action in recognition of how Alzheimer’s (or any dementia) severely affects the person providing care—not just the person suffering with the most horrific illness of our time. Let us focus additional attention on these dementia care champions who truly deserve a day when their courage and fortitude are honored without exception.

As a worldwide advocate for the caregiver—the true hero of our Alzheimer’s Generation—I will be proudly wearing purple to show my support. And in keeping with the knowledge that caregivers who are caring for a loved one with dementia need all the assistance they can get,  I also will  be looking for opportunities to provide much needed hands-on support.

My action plan for success is to go directly to the care giver and make specific offers of help, such as the following:

  • “I’m going to the grocery store. What can I pick up for you?”
  • “I’ve got a couple of hours this tomorrow afternoon. May I sit in for you while you run a few errands or take some time for yourself?”
  • “I doubled my famous lasagna recipe so that I could share it with you. I brought enough to last you for several meals.”
  • “Do you need some laundry done? I can pick it up today and bring it back clean tomorrow.”
  • “With all of the falling leaves, I see your front porch and deck need to be swept and your front lawn needs raking. I can take care of that for you.”

You might even have other thoughts of ways to provide care giver help—feel free to send a list of additional ideas in the comments section of this blog. Even sending a card or making a phone call to check in on a caregiver can mean the world to them. Emails and text messages work, too, but often a personal visit is even better. Contact with the outside world can help lift a caregiver’s spirits.

Are you with me? If you know someone who’s caring for a loved one who has Alzheimer’s disease, wear purple and find a way to make a difference and lighten their load—and don’t take a polite “no” for an answer.

WaymanLaura Wayman, also known as The Dementia Whisperer,  is author of A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimer’s Disease or Other Dementia or Memory Loss.

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Filed under Dementia and Memory Loss, Health and Medicine