About CheckOrphan

Founder and President of CheckOrphan.org

Genes linked to Improved Survival for Pancreatic Cancer Patients

The Translational Genomics Research Institute (TGen) along with other key research institutes, which includes the Johns Hopkins University School of Medicine, the Mayo Clinic, and Memorial Sloan Kettering Cancer Center, found a new set of genes that can demonstrate improved survival for patients affected by pancreatic cancer after surgery. In addition, the study revealed that detecting circulating tumor DNA in the blood could offer a preliminary indication of tumor recurrence.

Dr. Daniel D. von Hoff, a TGen Distinguished Professor, Physician-in-Chief, Co-Director of TGen’s SU2C Pancreatic Cancer Dream Team, and Chief Scientific Officer at the Virginia G. Piper Cancer Center Clinical Trials at HonorHealth, stated in TGen’s article: “These observations provide predictors of outcomes in patients with pancreatic cancer and have implications for detection of tumor recurrence, and perhaps someday for early detection of the cancer”.

The study, Clinical implications of genomic alterations in the tumor and circulation of pancreatic cancer patients, was published in the journal Nature Communications on July 7th.

Read more on TGen’s News section: https://www.tgen.org/home/news/2015-media-releases/tgen-finds-genes-linked-to-pancreatic-cancer-survival.aspx#.Vd8qarTfK-I

The TGen Institute is a non-profit organization dedicated to helping patients with cancer, neurological disorders and diabetes. Check them out at: https://www.tgen.org

Learn more about TGen’s pancreatic cancer research: https://www.tgenfoundation.org/netcommunity/page.aspx?pid=983

In the Spotlight: Mr. Jimmy Lin – Founder of the Rare Genomics Institute

Mr. Jimmy Cheng-Ho Lin, MD, PhD, MHS is Founder and President at the Rare Genomics Institute (RGI). The Institute leverages cutting-edge biotechnology to tackle rare diseases. The RGI provides an expert network and online crowdfunding mechanism to link families with scientists, so that together they can pursue customised research projects for rare diseases. You can find out more about RGI here.

Recently, Mr. Lin, in an interview for the Orphan Drugs Summit (LINK), explained his motivation for founding the Rare Genomics Institute: “In my pediatric rotation at Hopkins during medical school, I met a family who has visited some of the top hospitals in the world to seek answers for their son. Alas, there was no clinical diagnostic that was available then – but from my PhD work, I had just helped sequence the exomes of individuals with cancer. This started as a journey to start an organization to help connect patients with research and clinical resources to end their diagnostic odysseys and start the search for therapies and cures.”

With over 7,000 rare illnesses, a large number is not actively being researched. Consequently, for these orphan diseases, there are no or only very limited, infrastructure to allow for investigation or treatment.

If you would like to hear more from Mr. Lin, why not check out some of his TEDx Talks: https://youtu.be/evC3HGI-Lnc and https://youtu.be/4tarl95XP1M

For more information on the Orphan Drugs Summit, on the 17 – 18 September 2015 in Copenhagen, Denmark, see: http://www.orphandrugssummit.com

You have 20 minutes to live.

Waterdown man faces necrotizing fasciitis – and survives to tell the tale

Flamborough Review

“I thought maybe I just needed some antibiotics,” Tom Buttenham recalled from the armchair of his Waterdown living room. “I thought I had blood poisoning.”

So for two hours one day in late June, he sat in the Joseph Brant Hospital emergency room, waiting.

During that time he read a letter from his doctor, who suspected Buttenham had cellulitis.

The truth would be far worse.

“Maybe it will save somebody else’s life. This is a rare disease and it’s deadly.”

After the wait, Buttenham was brought into the next room, where there was a hospital bed waiting and a nurse ready to insert a catheter.

“I said to my wife, ‘This isn’t good,’” said Buttenham.

The next thing Buttenham knew, three surgeons showed up.

“He looks me straight in the eyes and he says to me, ‘I’m not going to beat around the bush,’” Buttenham said of the surgeon.

“’You’re dying.

“I’m like, ‘What?’”

The surgeon explained that Buttenham had necrotizing fasciitis, commonly known as flesh-eating disease or flesh-eating bacteria.

Buttenham recalls the surgeon saying,“‘You’ve got 20 minutes to live. I’ve got to cut your leg off, or you’re going to die.’”

Necrotizing fasciitis is a rare infection that works its way rapidly through the layers of tissue that surround muscles.

According to Health Canada, the disease destroys tissue and can cause death within 12 to 24 hours.


It began the night before, when Buttenham was in the same armchair.

Two days after watching his beloved Chicago Blackhawks win the Stanley Cup, the 59-year-old mechanic manager flicked a small scab on his leg, near the inside of his knee.

“I think it was a black fly bite,” he recalled. “I brushed (the scab) off and it came off so easy.

“It came off and I said, ‘That doesn’t look normal.’ Because it came right off.

“There was no bleeding, but it looked deep.”

About an hour later, Buttenham felt his temperature begin to rise. He put a towel on his head to cool down and went to bed.

When he awoke the next day, there was a big yellow bruise around the bite.

“I said to myself, ‘I didn’t hit myself,’” he recalled. “I’m touching it and it felt raw.”

Then, after going to work, the outside of the bruise started to turn red. His co-workers advised him to go to the hospital.

“I’m thinking, ‘I’ll wait until the end of the day and I’ll go to the hospital – I don’t want to sit there for six hours,’” recalled Buttenham.

But about an hour later, he started to notice a thin red line slowly growing up his leg, at a rate of about an inch per hour.


Like in Buttenham’s case, Health Canada describes the symptoms of flesh-eating disease as including a high fever and a red, severely painful swelling that feels hot and spreads rapidly. The skin may become purplish and then die.

Often, the swelling starts at the site of a minor injury, such as a small cut or bruise, but in other cases there is no obvious source of infection.

Buttenham called his doctor, who advised him to come in immediately. After looking at the leg, his physician provided a note and sent him directly to the emergency room.

Buttenham drove straight to Joseph Brant Hospital, where he met his wife Judy and best friend Yuri. When he arrived at the ER, Buttenham gave a nurse the letter.

“She didn’t look at the letter,” he said, “Didn’t even read it. Handed the letter back to me and said, ‘OK, sit over there.’”

At that point, Buttenham still didn’t know what was wrong.

Because flesh-eating disease progresses so rapidly, Health Canada says treatment usually involves surgery to remove the infected tissue and antibiotics to fight the infection.


Buttenham’s surgeon told him if he amputated his leg, he would have a 50-50 chance of living. If not, his survival rate was 20 per cent.

“I said, ‘OK, suppose I want to keep my leg?’” Buttenham said. “He said, ‘I have to debride it (cut out the dead tissue). You’ll be dragging around a dead leg.’

“So that’s my choice,” Buttenham said. “Drag around a dead leg, or cut it off and have a 50-50 chance of living because it has advanced so far.”

Because the disease had progressed as far as his hip, an amputation would have meant he couldn’t use a prosthetic.

“I’m thinking, ‘OK, no artificial leg. I’m 59 – do I hop around on one leg or live the rest of my life in a wheelchair? I say, ‘OK, cut it off.’”

But between the first and third floor, where the operating room is located, Buttenham had a change of heart.

“I said, ‘Doc, I want to keep the leg,’” Buttenham explained. “He looks at me and said, ‘You’re willing to give up your life for your leg?’”

I said, ‘I don’t want to live without it.’”

“I’ll do the best I can,” is the last thing Buttenham remembers the surgeon saying before going into the operating room.

“I thought I was going to die, “Buttenham recalls. “I really thought it was over.”

When he came to three days later, after two surgeries, Buttenham was visited by his surgeon.

“We saved you, but we don’t know if you’re going to live until (we do) the third surgery,” Buttenham recalls the doctor telling him.

“It’s too late to cut off your leg – if (the bacteria) got into your blood, you’re done.”

Buttenham had to wait 72 hours more, before he found out the good news: he was going to live.

Now, more than a month after being discharged from the hospital, Buttenham said he’s telling his story to raise awareness.

“Maybe it will save somebody else’s life,” he said. “This is a rare disease and it’s deadly.”

According to statistics from 2012, Health Canada estimates there are between 90-200 cases of flesh-eating disease per year in Canada. The disease kills 20-30 per cent of those diagnosed. Necrotizing fasciitis is caused by a number of different bacteria, including group A streptococcus (GAS) – a common bacteria carried by many people on their skin or in their throat. The same bacteria causes strep throat.

However, few people who come into contact with GAS will develop a serious disease.

While Health Canada says scientists don’t know why the bacteria only causes a minor infection in some people, but poses a serious threat to others, risk factors include a weakened immune system and chronic diseases.

However, the agency stresses that event with these risk factors, the chance of getting flesh-eating disease is very rare.


In Buttenham’s case, he was just getting over bronchitis and has borderline Type 2 diabetes.

He said a doctor from Health Canada told him, “Somehow it entered your body through that bite and your body had lined up into a perfect storm.”

While Buttenham doesn’t advocate going to the hospital for any small nick or scrape, he said doctors told him to swipe any such abrasion with hydrogen peroxide and bandage it.

The telltale sign of the disease, he said, is the thin red line growing from a bruise.

“If you see that red line starting to grow, you need to get to emergency immediately,” he urged. “You need to get there and people need to know that. You’ve got to tell them, ‘I’ve got a thin red line growing from a bruise,’ so that they’re aware of it.”

Buttenham noted that, throughout his ordeal, the care he received at Jo Brant was top-notch.

“He literally saved my life,” Buttenham said of his surgeon. “And my leg.

“I couldn’t have gotten better care – they really saved my life.”

In terms of his prognosis, Buttenham said he has a scar from ankle to hip where they removed the infected tissue.

“I’m not going to be a bikini model,” he said, “That’s what the surgeon told me.”

He noted it will still take months before the original site of the infection is healed.

But once everything heals?

“I’m OK,” Buttenham said. “I’m going to have a limp, but I can live with that.”

Rare disease patient experience survey

Welcome to the Rare Disease UK patient survey. Rare Disease UK is an initiative of the charity Genetic Alliance UK. Anyone who cares for, or is affected by, a rare or undiagnosed disease is welcome to complete the survey.

You will probably know if you have a rare condition, as a doctor will have told you, or no one you know has heard of it. Almost every genetic condition is rare. Alternatively, if clinicians are having a hard time diagnosing the condition, then it’s probably rare. The European definition of rare is a prevalence of fewer than 1 in 2,000. If you think a condition is rare or it hasn’t been diagnosed, then we’d like to hear from you.

We hope you will take the time to complete the survey – it should take around 25 minutes to answer the questions. You can leave the survey at any point and return to finish it at a later date if needed.

All the information you provide will be confidential. No individual or identifiable information will be shared with any outside person or organisation. The results will be aggregated and made anonymous. You do not have to provide us with any information that may identify you.

The responses you provide will be vital to give us a full, up-to-date picture of the experiences of patients of rare diseases. The findings will be published in late 2015 and will be widely disseminated locally and nationally to highlight the needs of patients with rare diseases. By participating in this survey you are agreeing that the information you provide can be used anonymously for policy work at Rare Disease UK and Genetic Alliance UK.

As you may recall we previously carried out a survey that was published in 2010. This was the first survey of its kind to bring together the experiences of rare disease patients and the report has been invaluable to the influencing and campaigning work of both us and our members.

This survey is in part a follow up to the previous survey, we apologise if the questions feel familiar. You will be asked at times to recall your experiences in the last 5 years, or since you have received your diagnosis. Please answer the questions as best you can. Your answers will help us to understand the current experiences of patients with rare or undiagnosed conditions and to identify whether there has been progress in the last five years.

If you have any questions about the survey and how your results will be used or if you would like this in another format or the Welsh language, please do not hesitate to get in touch by emailing emily.muir@raredisease.org.uk or calling 020 7704 3141. For more information about Rare Disease UK please visit our website: http://www.raredisease.org.uk/

For more information about Genetic Alliance UK please visit our website: http://www.geneticalliance.org.uk/

Genetic Alliance UK is a registered charity numbers: 1114195 and SC039299
Registered company number: 05772999

Dr. Trish Murray: Why is my immune system attacking me?

Dr. Terry Wahls used to run marathons and climb mountains in Nepal. She competed multiple times in 54-kilometer cross-country ski marathons. But then she was diagnosed with multiple sclerosis in 2000, and by 2007 she spent most of her time lying in a zero-gravity chair when she was 52 years old.

Over the years she “realized that conventional medicine was not likely to stop what was happening to me.” So, she started to research on her own new ways to treat her disease.

“I researched Parkinson’s disease, Alzheimer’s dementia, Lou Gehrig’s disease and Huntington’s disease. I discovered that, in all four of those conditions, the mitochondria — small subunits within cells that manage the energy supply for that cell — stop working well and lead to early death of brain cells, causing shrinking of the brain.”

During her research she also found the Institute for Functional Medicine, which has the goal to provide clinicians with a better way to care for people with chronic disease by looking at how the interaction between genetics, diet, hormone balance, toxin exposure, infections and psychological factors contribute to the development of disease or the improvement of one’s health and vitality.

Through her own research and the help of Functional Medicine concepts, Dr. Wahls completely changed her life and diet and now she is out of a wheel chair and walks and rides her bicycle and swims.

She explains: “The old me, who had relied on drugs and procedures to make my patients well, who had been made progressively more feeble by my illness, had been replaced with someone who understood intellectually and physically that disease begins at the cellular level, when cells are starved of the building blocks they need to conduct the chemistry of life properly, and that the root of optimal health begins with taking away the things that harm and confuse our cells while providing the body with the right environment in which to thrive. I finally understood what I had to do to provide my cells with all the building blocks of life they needed to heal and it worked.”

So, Dr. Terry Wahls is living proof that a devastating autoimmune disease like multiple sclerosis can be reversed.

She also states in the introduction of her book, “The Wahls Protocol,” “The purpose of my years of self-experimentation was to determine exactly what the body needs to fight back against autoimmune disease. The result is The Wahls Protocol: a systematic and aggressive intervention into your body’s downward spiral. It is a mending of your broken biochemistry that comes not from your doctor or your pharmacist but from you, making changes that are entirely under your control. It is a restoration of your body’s healing power generated by altering what you eat and do each day.”

Dr. Trish Murray, whose mission is to empower people to optimize their own health, will be presenting the concepts of The Wahls Protocol on Thursday evening Aug. 20, from 6  p.m. to 7:30 p.m. at the T. Murray Wellness Center Inc. in Conway. This talk is aimed at people who have an autoimmune disease or any other debilitating chronic disease. For the cost of the average co-pay: $20 per person or $30 if you bring a buddy. Call (603) 447-3112 to reserve a seat.

Inside the rare disorder that makes you think you’re brain dead

brainDan Kitwood/Getty

Humanity’s greatest conflicts emerge from two parties looking at the same thing and each insisting, with the utmost confidence, that only he or she sees it correctly.

More fundamentally, each party insists that there is a correct way to see it — that the issue is a matter of fact, not opinion. Same-sex marriage or flying the Confederate flag is simply wrong, end of discussion. Your co-worker is stuck-up, not shy. The dress is white and gold, not blue and black — are you blind?

The notion that you see the world objectively, that you have unmediated access to reality, is called “naive realism.” Few fields have made greater strides in combatting naive realism (and by strides I mean baby steps) than neuroscience. We now know the layers of filtration, computation and interpretation that lie between incoming photons and the image of a rainbow. Colors — and opinions and morals — are constructed in our heads, not in the world.

Neuroscience doesn’t stop at blurring our certainty in the world around us. It turns our questioning inward, toward our supposed core. We all know René Descartes’s proposition “I think, therefore I am,” the first step in establishing what exists and what doesn’t — a stomp on the rock at the center of our universe. But once you understand the brain, even the “I” in “I think” is up for grabs. And so goes “I am.”

In “The Man Who Wasn’t There,” science writer Anil Ananthaswamy smartly explores the nature of the self by way of several mental conditions that eat away at patients’ identities.

We read about Alzheimer’s, autism, schizophrenia and less-common experiences such as ecstatic seizures or the certitude that one’s brain is dead — and not just in the hangover or brain-fart sort of way. Following in the steps of Oliver Sacks’s “The Man Who Mistook His Wife for a Hat” (1985) and V. S. Ramachandran and Sandra Blakeslee’s “Phantoms in the Brain” (1999), Ananthaswamy uses neuropsychology and narrative to take us inside the heads of people experiencing realities very different from our own.

Central to the sense of self is the feeling of free will — the impression that you make decisions and conduct behavior of your own volition. You are not a pre-programmed or remote-controlled robot. But in schizophrenia, this experience can go haywire.

Normally, your brain registers the decision to act, immediately followed by the feeling of actually acting, and it concludes that you must be responsible for initiating the action. But in schizophrenia, mistimed feedback mechanisms can make behavior and thought seem to appear out of nowhere. Suddenly your internal monologue becomes a foreign voice. In both ill and healthy brains, our explanations for much of what happens in the world — including our own behavior — are manufactured after the fact. This insight leads to a concise definition of the self. As Ananthaswamy puts it, “You may be your brain’s best guess as to [the] causes of all your internal and external sensory signals.” Something is causing these thoughts and actions, and when the internal timing is tuned, that thing is what we call the “self.”

Another way of viewing the self is as a model, a simplified representation of the entire brain and body (and sometimes the surrounding environment), so that different parts of the brain can coordinate to predict and control what the organism as a whole will do next.

Sometimes parts of this model become so wildly inaccurate that you have, say, body integrity identity disorder, in which you feel as if a limb does not belong to you. In one stirring chapter, Ananthaswamy travels with a man to Asia to have his leg voluntarily amputated, the only reliable remedy for such a mismatch.

Intelligent organisms such as humans don’t like disorder, and so we try to organize information into models or stories. As Ananthaswamy says about long-term memory, it’s “less constrained by fidelity and is more concerned with the need for ‘coherence.’ ” The closest available coherent story is often an absurd one. When the brain’s temporoparietal junction, which integrates touch, vision, balance and body position, suffers a glitch, the brain weaves an alternative tale and produces the convincing experience that you have a doppelganger sitting next to you or that you are floating outside your body.

Similar out-of-body experiences can be produced by researchers using virtual reality or brain electrodes.

“What’s clear from these studies,” Ananthaswamy writes, “is that aspects of our sense of self that we take as given and immutable — a sense of body ownership, a sense of where the self is located, and even the perspective from which the self observes — can be disrupted, even in healthy people.” If such basic elements of our experience are malleable, how can we expect to see the truth about anything else?

Selves are malleable because they’re contingent on their neural wetware. Reading these case studies, you just want to tell people, “No, you’re not dead!” Or, “Your wife is not really a hat!” It’s hard to grasp that people can’t reason themselves out of such delusions. This frustration reveals the extent of our mind-body dualism. Despite our intuitions, the mind can’t tell the brain how to operate. It, and all of its reasoning capacity, are as dependent on the brain’s moving parts as running is on our legs.

A recent study found that explaining naive realism to people and showing them visual illusions reduced their certainty in their judgments of others’ behavior — whether Donald is being hostile or just assertive. Maybe neuroscience education can help alleviate social strife. (Who knows how many wars the dress-color controversy has averted by highlighting the subjectivity of experience — not counting the ones it’s sparked online?) One might start by explaining how the self is fabricated and that it is a fabrication, just like everything else we experience.

“The man who wasn’t there” is an evocative term for a particular pathological self-negation. But, according to neuroscience, none of us are here.


Writing About Cancer

by Anya Silver

I have considered myself a poet since reading Tennyson’s poem “The Lady of Shalott” in eleventh grade English class and deciding that I wanted to do what Tennyson did: make magic weavings out of words. For years, I wrote about what mattered in my life: my childhood, family and romantic relationships, the glories of the natural world, and my faith. Looking back, most of my poetry was mediocre. I clearly hadn’t found my true subject.

Then came cancer.

When I was diagnosed with inflammatory breast cancer in 2004, I was thirty five years old and pregnant. I had always been healthy, but had suffered two miscarriages in the past year, one of them very late and traumatic. Now, I faced losing my own life at a time when I was supposed to focus on bringing new life into the world. 

I underwent aggressive chemotherapy treatment while pregnant, was induced into labor a month early, and then completed chemotherapy and had radiation while tending my newborn son. 

After being in remission for over five years, I had a recurrence of IBC in my sternum in 2010, and for the last five and a half years, have been living with metastatic, or Stage IV, cancer. My son is eleven years old and healthy.

Everybody copes with the devastating diagnosis of cancer differently. For me, the most natural response was to write about it. I was unable to write much during the initial treatments, both because of fatigue and because I was emotionally overwhelmed by treatment. The poet Wordsworth believed that poetry “takes its origin from emotion recollected in tranquility.” I needed some distance from my diagnosis in order to write about my experiences. However, once I began to write poems about cancer, I couldn’t stop. I have been writing about life with cancer ever since. I have found my subject-or rather, my subject found me. 

I am often asked why I write poetry about cancer, which is, as one reader told me, “so depressing.” I write to make meaning out of my life. Cancer strikes me as intrinsically random and meaningless. We can not accurately predict who will get breast cancer or who will die from it, or when. Cancer brings chaos into one’s life. Writing about cancer, on the other hand, gives me a sense of control over my life. By writing about cancer, I can take away some of its power over me. I can’t control my cancer, but I can control how I react to it. Writing is a craft. Like any craft or practice (pottery, building model trains, painting, knitting, baking), careful attention to a process gives one the sense that one is doing something productive and useful, and creating order and meaning in the world. Writing about cancer is a vocation. 

Second, I write to better understand myself. Writing, like prayer, is a form of attention and meditation. When I write, I explore my own feelings, and the expression of those feelings is both a relief and a way to know myself better.

Third, I write to share my experiences with others, both those with cancer and those without. I want people with cancer to know that they are not alone, and I want people without cancer to know what, from my perspective, that experience is like. Cancer is a complex disease, and it evokes complex responses.

I strongly recommend that women with cancer write about their experiences, whether or not they consider themselves writers, and whether or not they plan to make their writing public. Keeping a journal is an excellent way for women to express-and therefore own and exorcise-their greatest fears and anxieties. During a decision-making process (whether or not to switch treatments, for example), writing about the various pros and cons of different choices helps one reflect upon and make better decisions. A diary can be used as a tool for a journey inward that helps one better understand oneself and one’s experiences. 

There have been many memoirs by breast cancer survivors and those living with cancer. However, every experience is different, and we all have our own stories to share. Whether you start a blog, write an essay about your experiences for your church bulletin or a breast cancer organization, give a speech, or write in a literary form such as fiction, poetry, or drama, you have something unique to say. Don’t worry that you’re not a good enough writer. Just write. 

Several years ago, a dear friend and I named our cancers. Her cancer was named Midge and mine was Madge. I expect that, some day, Madge will bring my life on earth to an end. But now, Madge is my subject. She will not control my life. I will not let her. By writing about cancer, I empower myself and my life. I am more than cancer: I am a woman, mother, wife, and poet.

[Editor’s note: Anya Silver is the author of two books of poetry, I Watched You Disappear (2014) and The Ninety-Third Name of God (2010), both from the Louisiana State University Press. She was named Georgia Author of the Year/Poetry for 2015. She is a professor of English at Mercer University and lives with her husband and son in Macon, Georgia. Anya has been living with inflammatory breast cancer since 2004.]

To read more IBC stories of hope, help and memories, visit the IBC In Our Own Words page. To contribute your IBC journey to the page,contact the newsletter editor.

American Society of Clinical Oncology (ASCO) 2015

by Ginny Mason, Executive Director

photo of Ginny MasonI’ve heard it said that more ‘important work’ goes on in hallways rather than at the official presentations at meetings like ASCO. Having spent five hectic days in Chicago attending the 2015 Annual Meeting, I would agree with that statement!! From very early in the morning until late at night there are dozens of sessions to attend but it’s those face to face opportunities to connect, that help cement working relationships. 

Activity started with a pre-conference meeting of the SystHERs RegistrySteering Committee where I, along with Musa Mayer, represent the patient voice in this registry project collecting data on Her2 positive metastatic breast cancer patients. The steering committee also includes breast oncologists and representatives from the sponsor, Genentech.

Knowing that immunotherapy would be the buzzword for this year’s meeting I participated in a four-hour training provided by the Society for Immunotherapy of Cancer (SITC). This is a complicated subject and we’ll be addressing this more in upcoming issues, so stay tuned. Immunotherapy is slowly making it’s way into breast cancer.

ASCO covers all types of cancer and while I focus primarily on breast cancer I went to presentations and posters on biomarkers, metastasis, emerging therapies, and general sessions. There were no IBC specific presentations just some posters. Dr. Overmoyer and colleagues of Dana Farber Cancer Institute had a poster on triple-negative IBC treatment and one on risk factors. (P6-10-08 & P6-14- 09). M.D. Anderson colleagues had two posters on Her2 positive IBC treatment (P6-14-01 & P6-14-07) and Dr. Cristofanilli and colleagues had two posters on genomic profiling and migration and invasion in IBC (P6-14-02 & P6-14–6). There were three additional posters listed but not all were posted for viewing. In addition there are some IBC poster abstracts only available on-line as e-abstracts. You can search the ASCO Annual Meeting Abstracts at http://bit.ly/1H4qqmp to read full abstracts. Other resources are available on the ASCO Annual Meeting website as well.

Websites such as Practice Update, Medscape, and Cancer Therapy Advisor provide good overviews of the main topics from the conference if you’re interested in overviews. And ASCO provides a Research Roundup: News for Patients from the ASCO 2015 Annual Meeting. The breast cancer section begins on page 6. 
image of twitter stream
Vital Options International hosted two programs during ASCO focused on topics important to the broader cancer population. I was able to participate in “Right Patient. Right Treatment. Right Now!” a session on the challenges associated with innovation in treatment. Check out the @IBCResearch tweets from this program on the “tweet beam” screen!

Special thanks to the Conquer Cancer Foundation for the scholarship that covered my expenses to attend this year’s Annual Meeting. As a scholarship recipient I was asked to share my thanks in a filmed statement to encourage support of this philanthropic arm of ASCO. Who knows where my face and IBC message are going to show up!!

Get Help Understanding How the Research Affects You

by Phyllis Johnson

photo of Phyllis Johnson[Editor’s note] Board of Directors member, Phyllis Johnson, writes regularly for HealthCentral.com. Below is an excerpt from her December 18, 2014 article: 

“Every December thousands of researchers and medical professionals from all over the world pour in to San Antonio, Texas, for the San Antonio Breast Cancer Symposium (SABCS). They share their findings about breast cancer and its treatments in technical, medical language, which will be translated into every day language for consumers in a flood of news reports. Swimming through that flood is a challenge. How can you tell if any of the San Antonio news is relevant to you? Most of us will need to rely on our doctors to help us sort it out. Here is why. Much of the news is relevant to small sub-groups of breast cancer patients. It used to be that all you needed to know was the hormone receptor and Her2 status of your tumor. Much of the new research deals with characteristics of tumors that aren’t even being tested in most doctor’s offices. Breast cancer is a collection of diseases, not just one, so a research report that sounds promising in a headline may not be for you.

Read the complete article.

High School Junior Studies IBC as Research Intern

doctor mark dewhirst and Arjun aroraA recent Duke Cancer Institute blog story featured Arjun Jay Arora, a high school junior who over the course of the past year interned at Duke and focused his research on inflammatory breast cancer (IBC). This may not come as a surprise since his mother Gayathri Devi, PhD, Associate Professor with the Departments of Surgery and Pathology at Duke Cancer Institute has been studying IBC for some time.

The photo shows Arjun with his mentor, Dr. Mark Dewhirst. That name should sound familiar to our readers. Dr. Dewhirst received the Kathleen Livingston Memorial Grant in 2013, from the IBC Research Foundation, to study the mechanisms associated with skin metastasis of IBC.

While Arora didn’t start out in Dr. Dewhirst’s lab, he seems to have found his niche there having lost someone “very dear” to metastatic 
breast cancer. His work has given him opportunities beyond the lab and has fueled his desire to continue this path.

“I’ve grown up in Duke’s backyard,” he said. “Having conducted research at Duke it’s become one of my dream schools. I’d like to pursue biomedical sciences. Perhaps I will be able to pair those studies with public policy, which would then enable me to put to use my passion for writing. I am truly grateful for Dr. Dewhirst’s support, mentorship and inspiration. My experiences this year have exceeded anything I could have imagined.”

Read more about Arjun Jay Arora and his research at Duke.

Free Evidence-Based Health Care Course Offered by Johns Hopkins

Musa Mayer and Kay Dickersin
Musa Mayer, Kay Dickersin

Designed by Kay Dickersin and Musa Mayer, the goal of the course is to help consumer advocates understand the fundamentals of evidence-based healthcare concepts and skills.

We are working to engage patients and consumers as full partners in this new model for health care,” said Kay Dickersin, PhD, a professor in the Bloomberg School of Public Health’s Department of Epidemiology and director of the U.S. Cochrane Center. “We want consumer advocates to successfully navigate the world of medical information and be able to critically assess results from research studies….”

“Every day, an overwhelming amount of health care information appears in the media,” said Mayer, founder of AdvancedBC.org and noted consumer advocate. “Much is oversimplification or outright marketing. Consumer advocates may be forced to rely on media reports, if they don’t know how to find or recognize high-quality research evidence.We want advocates to have the tools they need to understand how scientific research is conducted and how real advances in medicine are actually made. Whether advocates are helping people to make difficult health care decisions, sitting at tables where scientific and research decisions are made or trying to influence public policy, learning these skills will empower all of our work.”

Registration is open and free of charge. 

For more information and to register:
http://us.cochrane.org/understanding-evidence-based- healthcare-foundation-action