Free the Data Announces New Partnership with Rep.Wasserman Schultz

Sharon Terry

FTD_logo3WASHINGTON, DC (October 8, 2014)—Free the Data, a national coalition of organizations dedicated to freeing genetic information, announced that U.S. Rep. Debbie Wasserman Schultz (FL-23) was named its Honorary Chair.

“The time for hoarding data as a commodity is over,” said Sharon Terry, President and CEO of Genetic Alliance, the nonprofit health advocacy organization that coordinates Free the Data. “The Coalition is thrilled to have a powerful partnership with Congresswoman Wasserman Schultz. In Breast Cancer Awareness Month, we are confident that the Congresswoman adds strength and momentum to the Free the Data movement, particularly as we work to free data associated with breast and ovarian cancer!” (more…)

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Vaccine Injury Stories: the Sacred Cows of the Internet?

When I first started looking into vaccines, I had no idea that an anti-vaccine movement even existed. I came across claims that the vaccines were toxic and dangerous; the diseases, it was claimed, were not. I have some background in science, so I was able to dismiss those claims as inaccurate, but I couldn’t help but be drawn in by tragic, angry and deeply personal stories from parents who claimed their children were harmed by vaccines.

I dared not question them, but I still couldn’t understand…

If vaccine injuries were occurring on a scale like this, why wasn’t anybody doing anything about  it?  And why wasn’t the media reporting on them?

I wanted to know more about these vaccine injury stories but worried it would be insensitive to probe or question their accuracy. I could hurt their feelings or worse, insult their child’s memory. After all, while I (more…)

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Federal Changes in Lab Results Access Can Make Personal Health Management Easier

Terri Prof Headshot 0412Have you ever received a phone call from the doctor’s office with the message, “Hello Ms. X, Your test results are normal.  Make an appointment next year.”?  All you know is what the healthcare provider tells you over the phone.  Maybe this conversation happened in the physician’s office during your visit.  Your doctor swoops in, glances at your test results and breezes through the test results.

If you are healthy and have never had any major health issues, this may be enough information.  You continue on for another year, or 6 months, without a worry.  But, maybe you wonder, “What does ‘normal’ mean?  Can I do anything to improve my health?”  How do you know?  Are you at the high end, the low end, just barely in the range? (more…)

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Why I Fight for Change in Domestic Violence Legislation

In 2009 I became the victim of a violent crime, domestic assault with a weapon. The local newspaper’s front page story included the following phrases: “Felony Assault,” “Domestic Assault with a Weapon,” “False Imprisonment,” “beaten,” “hit about the head and body,” “beaten with hands, knees and feet,” “urinated on,” “beaten with a wrought iron cross,” “refused to let leave or use the telephone,” “numerous injuries,” “numerous bite marks about her body,” “lost consciousness,” “escaped.” Lucky to be alive should have been included.  (more…)

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Back to School… Co-Parenting Style

Amber Coleman-MortleyIt’s back to school season!  Malls and stores have had their sales; schools have requested their info; doctors’ offices are quickly fulfilling vaccination and proof of appointment forms.  But most importantly, parents are eager to send their little ones off to be enriched amongst a class of their peers.  It’s a beautiful time.  It got me thinking- how can divorced and separated families be just as successful as families who are together this school year?

There are several challenges that kids from divorced and separated homes face.  Beyond emotional challenges, there are the self-confident, psychological, economic and logistical challenges, which can be (more…)

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Iowa Accountability Program’s Judicial Training Institute Aims at Improving the Handling of Domestic Violence Cases

iapDomestic violence is an epidemic that impacts an estimated 6,000 Iowans each year. While many view domestic violence as a private issue, Kimberly Baxter, Director of the Iowa Accountability Program, identifies how domestic violence is truly a community concern: “Domestic violence affects everyone from service providers to families and the community at large. We need to address domestic violence as a community. Brutality behind closed doors is not only real, but also taboo. It is not something we want to discuss, but if we cannot discuss it, how can we address it? How can we mitigate it?” For nearly ten years the Iowa Accountability Program (IAP) has worked to assist victims of domestic violence and the communities in Iowa that support them. This year, the IAP aims to strengthen its impact through its new Judicial Training Institute. (more…)

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An Interview with Amanda Sager

asAmanda Sager graduated from Bridgewater College in 2009 where she received a Bachelor of Science degree in Family and Consumer Sciences with an emphasis on Early Childhood Development. After college, she became the Site Director for the After School program at Cub Run Elementary in Rockingham County, Virginia. After a year at Cub Run, Amanda then moved to Mountain View Elementary in Rockingham County to open the Before and After School program as the Site Director there.  She was at Mountain View for three years before accepting the position as Behavioral Specialist at Spotswood Elementary School in Harrisonburg City. After two years at Spotswood she moved to Thomas Harrison Middle School in Harrisonburg City to work with students with autism. Amanda started at Second Home same time as she started at Thomas Harrison. (more…)

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Disruptive Women in Health Care 2014 Summer Mini-Series: Back to School–At the Intersection of Health and Education

elbWhen thinking of what I wanted to do with my future, the one thing I was always sure of was that I didn’t want a job where I’d be chained to a desk all day. Enter: teaching. After working as a camp counselor for many years and being fortunate enough to observe and help in a variety of different elementary school classrooms throughout the past couple of years, I’ll be starting my junior year at James Madison University in the Department of Education—and I couldn’t be more thrilled about my experiences to come. (more…)

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From Helplessness to Hope: A Reflection on the Death of Robin Williams

Wrenn_Headshot (2)Collective focusing moments occur when an event takes us by surprise, shakes up our usual state of inaction, and captivates our attention in a way that generates public discourse.

When I saw the first words of the subject line of the news alert on my email announcing ‘Robin Williams, dead at 63’, I was in denial, shocked, but expecting a sudden heart attack as the cause. The news that he died by suicide was even more shocking and (more…)

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A Wake-up Call

After I found out I was pregnant last January, I knew I had a lot of work to do in the coming nine months. I was working full-time and going to school; I knew the costs of having a baby were high, but I naively thought that surely, in America, finding help as a low-income pregnant woman and single mother wouldn’t be that hard. If people can donate time and money to the SPCA, I thought, someone must give to organizations dedicated to supporting women like me.

It’s important to note that I do in fact have a job that I worked hard to get. (more…)

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“Give me your tired, your poor…”

Laura JacobsonThe rapid influx of unaccompanied immigrant children crossing the U.S.-Mexico border in the last few months has spurred a national conversation regarding the United States’ role in offering refuge to these children, the majority of whom are fleeing widespread gang violence and delinquency in their home countries of El Salvador, Honduras, and Guatemala. A key talking point for some in the debate has become the supposed threat to public health that these children pose. (more…)

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My Heart Breaks for Your Child

Autistic HoyaTrigger warning: Brief homophobic/heterosexist quote, and extensive quotes and descriptions of ableist and eugenicist rhetoric.

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“I don’t want a handicapped child.”

I read that line in a mother’s story of her disabled child’s birth and first few weeks, and it gave me that awful, wrenching feeling–you know, the one where your insides kind of shrivel up and your breath catches somewhere in the back of your throat, hinging on tears or gasps or other sounds of enervated shock. (more…)

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Has Patient-Centered Health Care Run Amok?

Trudy-Lieberman -- biggerBeginning with the Institute of Medicine’s (IOM) landmark Quality Chasm report in the late 1990s, the health policy establishment, the medical profession and the American public began to hear a new and disconcerting message: American health care was not patient-centered.

The IOM prescribed a number of recommendations to redesign health care delivery, one calling for patients as the source of control over their care. “Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them,” the IOM recommended, noting that patients should have access to their medical (more…)

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Delete Blood Cancer: What You May Not Know About Bone Marrow Donation

Terri Prof Headshot 0412We all know about blood drives and the importance of blood and platelet donations to save lives. And millions of people are registered organ donors (usually when they get their driver’s license). But did you know that there is another renewable, life-saving resource you could give?  It’s your blood stem cells/bone marrow. Only 11 million Americans are registered with the National Marrow Donor Program to help save lives if their blood stem cells match a person fighting any one of 70 blood cancers and diseases. (more…)

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Tech Will Transform the Doctor-Patient Relationship

The doctor-patient relationship lies at the heart of much Western thinking about health. But only a few centuries ago, most people in the UK never saw a doctor.

During the 19th century, the greatest strides in health and life expectancy came from improvements in nutrition, sewerage and water supply rather than the medics. But by the 20th century, doctors were much better informed about how to treat and prevent a number of illnesses. (more…)

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