What makes a disease rare?

Chloe’s Fight Rare Disease Foundation envisions a world where research gives every child a chance to fight, no matter how rare their disease; a world in which every childhood disease has a viable and effective treatment.

Our Mission

The mission of Chloe’s Fight Rare Disease Foundation is to support research that focuses on finding and implementing effective cures and treatments for rare childhood genetic diseases and raise awareness for the 7,000 rare diseases that affect 1 in 10 Minnesotans.

Our Values

Access/Equity for affected populations: Many children suffer from diseases that have potential cures but are not receiving adequate funding for further research. We are driven to provide each child with the chance to fight by targeting rare disease research.

Fiscal responsibility/efficiency for our donors: Chloe’s Fight Rare Disease Foundation understands that our contributors make a choice to give to us, many times sacrificially. Contributions are a sacred trust. We are committed to using all funds intentionally and with the purpose of furthering our vision for a world where each rare disease has a treatment.

Transparency for contributors and supporters: Chloe’s Fight Rare Disease Foundation understands that without our faithful supporters we cannot accomplish our mission. We strive to honor each contribution by communicating clearly with donors where their dollars are going and how that money will further the vision to provide each child with a treatment option.

Our Founders

 EricaBarnes thumbnailErica Barnes, co-founder and chairman of the board of directors
Erica and Philip founded CFRDF in honor of their late daughter Chloe Sophia Barnes (July 12, 2008-November 19, 2010). In addition to promoting rare disease research, she is employed as a speech-language pathologist in both the medical and educational setting. She is also mother to Eva (age 10 going on 14)and Cade, 24 months. Her interests include traveling, reading, writing, eating good food, and gardening. She also blogs for the Huffington Post and writes fiction. She is Chloe’s Fight tireless champion and has recently become the Minnesota Ambassador for the National Organization of Rare Disease.

PhilipBarnes_portrait_thumbnailPhilip Barnes, co-founder
Philip and Erica founded CFRDF in honor of their late daughter Chloe Sophia Barnes (July 12, 2008-November 19, 2010). Philip is a wealth management business architect at US Bank. He has recently completed a Master in Business Administration at the University of St Thomas, specializing in digital marketing and leadership. Being a dual citizen and the United States and France, he is an active member of the Alliance Francaise, serving on the executive board. Philip enjoys making and consuming good food, traveling, and anything that gets him out of doors.

 

 

Board Members

Bettina Hanna
Bettina Hanna leads Hanna XP Consulting, a marketing consultancy focused on growing companies by creating happy customers. Whether she’s working with start-ups, non-profits or Fortune 50 companies, Bettina has developed ideas that deliver results.
Her passion lies in understanding people: who they are, their wants and needs. She translates those insights into business building ideas. Bettina’s experience includes 12 years in marketing leadership roles at Best Buy, and senior leadership roles at consulting firms and advertising agencies, working with companies including McDonald’s, General Mills and SC Johnson. You could say that Bettina joined Chloe’s Fight before it was even created…when she became Godmother to Chloe on August 15, 2010. Along with her husband Sam, and sons Lucas and Marcus, Bettina has supported the foundation in a variety of ways, officially joining the board in 2016.

Andrew Babula
Andrew has a unique professional profile which combines formal business training and management consulting with corporate and commercial real estate strategy. Andrew’s experience includes organizational effectiveness, process improvement, planning and strategy, and real estate development. Andrew currently is an SVP of Consulting with JLL, a real estate advisory firm. Prior to JLL, Andrew founded Varro Real Estate, a real estate consulting firm. He also led portfolio planning at UnitedHealth Group and corporate and retail real estate strategy at Target Corporation. Andrew spent three years in management consulting at McKinsey & Company, where he refined his structured problem solving skills and strategic communication. He earned an MBA from Yale School of Management with a focus on real estate and strategy. Andrew also has a BS in Electrical Engineering from Loyola Marymount University and is Six Sigma Green Belt certified. As a board member of Chloe’s Fight, Andrew helps guide the organization’s vision and strategy. He lives in Hopkins, MN with his wife and three children. Andrew enjoys travel, home improvement projects, reading, and spending time with family and friends.

Twila Dang
Twila Dang is a married mother of three school age children. She is a graduate of Hamline University where she received a Bachelor of Arts in Psychology and Sociology.  Twila is the Executive Producer and radio host for Sunday programming on myTalk 107.1. Twila is also a parenting contributor to Twin Cities Live on KSTP Channel 5.

Dr. Lorentz
Dr. Romain Lorentz was born in Orléans, France, and raised in a nearby village. He studied law both at the Université d’Orléans, where he earned his Maîtrise (J.D.), and at the Université Panthéon-Sorbone/Assas in Paris , where he completed a DEA (LL.M.) and a doctorate in Comparative Law (LL.D./JSD). He taught American Law in Paris for 2 years and at the University of St Thomas Opus College of Business for nearly 10 years. He now works for Thomson Reuters as a Legal Research Specialist. In addition, Romain served on the Board of Directors of the Alliance Française for over 6 years and he has been serving on the French American School of Minneapolis School Council for 4 years. While doing research in Minneapolis, he met his wife, Cory, at a French conversation group in 2000. Their daughter, Chloé, 10, has been friends with Eva ever since they were 18 months old. Both families’ friendship has been lasting for 10 years.Romain has been supporting the Foundation for a few years in various ways (his breakout performance was playing the leading role in the 2012 5K Coffee Strroll promotional video) before officially joining the Board in 2016.

 

Medical Advisory Board

Dr. Buss
Dr. Buss is a board certified orthopaedic surgeon specializing in disorders of the shoulder and elbow. He is the founder of Sports & Orthopaedic Specialists. His past academic affiliations with the University of Minnesota include Associate Professor in the Department of Orthopaedics, Associate Professor in the Department of Family Medicine, and Director of Shoulder Services for the Department of Orthopaedics.

Dr. Buss earned his Doctor of Medicine from the University of Minnesota in 1983. After completing his residency at the Hospital for Special Surgery (a prestigious specialty hospital) through Cornell University Medical Center in New York City, he sought additional training through a Fellowship program in the areas of shoulder and sports medicine. He is certified by the American Board of Orthopaedic Surgeons, and is a member of the American Academy of Orthopaedic Surgeons. Other academic affiliations include membership in the American Shoulder and Elbow Society, the Association of Bone and Joint Surgeons, and the American Orthopaedic Society for Sports Medicine.

Dr. Buss served as team physician for the Minnesota Twins from 1990 – 2012. He is an orthopaedic consultant to the University of Minnesota varsity athletes, Macalester College and Northshore Gymnastics. He was the medical director for the 1991 U.S. National Figure Skating and the 1998 World’s Figure Skating Championships.

Dr. Buss is the author of numerous papers and book chapters. He lectures nationally and internationally and has taught a variety of medical courses. His expertise includes topics such as open and arthroscopic shoulder surgery, impingement syndrome, the evaluation and management of elbow pain as well as shoulder problems in sports medicine, total shoulder replacement, acromioplasty techniques and the clinical presentation and surgical treatment of supraglenoid cysts.

His research can be found in such publications as the Journal of Bone and Joint Surgery, the American Journal of Sports Medicine, and the Journal of Shoulder and Elbow Surgery, and various academic textbooks. He is also a professional consultant reviewer for the American Journal of Sports Medicine and the Journal of Shoulder and Elbow Surgery.

Dr. Buss has practiced medicine in the Twin Cities since 1989 and founded Sports & Orthopaedic Specialists in 1999.

Dr. Ramaiah Muthyala
Dr. Ramaiah Muthyala holds Ph.D (Natural Products), Ph.D. (Heterocyclic Chemistry) and MBA (International Management). He is Fellow of Royal Society of Chemistry. Among other awards, he received SC Amita award from the Indian Chemical Society. He has been editor or and coeditor of books, book chapters and has been in editorial boards of ARKIVOC, Mini-reviews in Medicinal Chemistry. For the last 12 years, Dr. Muthyala has been at the University of Minnesota where he was Associate Director, Center for Drug Design, and Associate Director (pre-clinical development) Center for Orphan Drug Research. He is also Associate Professor, Department of Experimental Clinical Pharmacology and Adjunct Professor, Department of Medicine. His research interests focused in rare diseases – the discovery and development of therapeutics for drug resistant bacterial infections, neurological diseases such as SCA1 and hemoglobinopathy such sickle cell disease. In his research, drug repositioning takes major emphasis to discovering drug leads.

 

President Trump, in honor of Rare Disease Day recognize the international medical community

February 28th is internationally recognized as Rare Disease Day. My daughter, Chloe, was diagnosed with a rare and terminal disease at the age of two in a miraculously short time due to the brilliance of her neurologist. The neurologist was Canadian. Chloe’s only hope of survival was a bone marrow transplant, a risky and arduous procedure. We put our youngest child’s life in the hands of a capable and caring surgeon at the Mayo Clinic. She was Pakistani. Throughout the transplant there were long days of agony and fear as we awaited the outcome. Since her immune system was completely gone, neither she nor I could leave our tiny ICU room. The resident on the medical team brought me a Starbucks coffee each morning. He was Egyptian. When it became clear that Chloe’s chances for survival were non-existent, we met with the team to decide whether to try a risky and painful second transplant or let her go. I shared with the doctors that I believed deeply in medicine but also that, at the end of the day, my Christian faith informed me that it is God who decides how many days we have on this earth. I sensed that my decision resonated deeply with my Pakistani doctor’s faith as well. She was a Muslim.

After Chloe passed away, my husband and I decided that we would dedicate our lives to finding a cure to the disease that took her in such a horrific way. We have formed deep and meaningful relationships with two amazing researchers in whom we have the utmost confidence. One is Czech. Our medical advisory board is made up of three men we have met on our journey who are volunteering their time and energy with no compensation other than helping grieving parents realize their dream of finding a cure for metachromatic leukodystrophy. Two of the three are immigrants. One is a green card holder. At a recent Christmas party I bumped into a colleague of our Czech researcher. We chatted about the exciting research at the University of Minnesota and its potential to save lives. He was Syrian.

In thinking through the list of medical professionals I have met throughout my experiences with rare diseases I am struck with the truly international nature of medicine and I worry about the impact that the Trump administration’s recent travel ban could have on scientific collaboration. President Trump continues to craft policies that restrict the flow of foreigners to the United States. In addition to severely hindering the influx of researchers and medical professionals from the seven banned countries, his sweeping approach to immigration has the potential to discourage physicians from other countries such as India and Pakistan from pursuing medical careers in the United states discourage physicians from other countries such as India and Pakistan from pursuing medical careers in the United States. The Mayo Clinic alone employs eighty medical staff, physicians, or scholars with ties to the seven restricted countries and these individuals could face logistical nightmares should they seek to travel outside the United States. Medical conferences are held around the world and the ability to come in and out of the United States is of critical importance to researchers’ ability to collaborate on vital medical discoveries.

The image of immigrants evoked by the current administration is often one of free loaders and criminals here to take our jobs or worse. Trump’s protectionist policies benefit from the public’s perception that immigrants are low education, low wage drains on our economy. But the American medical community employs a significant number of immigrants. Often these physicians work in rural communities where there are already doctor shortages. According to the American Medical Association, one in every four physicians practicing in the United States is foreign born with a high percentage being from Muslim majority Pakistan. The consequences of a reduction in doctor supply from Pakistan and other countries that perceive the United States no longer welcomes foreigners would be very serious.

A large number of people reading this post will face a medical crisis at one point or another. I will tell you from experience that in that moment of life and death you will not care if the first (or middle) name of your doctor is “Hussein”. You will not be interested in an extended theological discussion about Islam. You will want the very best physician who will care for you with knowledge and compassion. Today in honor of Rare Disease Day I challenge the administration’s image of the foreigner. Today I remind every American that a large number of America’s immigrants wear white lab coats and have stethoscopes hanging around their necks.

Chloe’s Cupcake

February is a month that brings to mind sweets, so it is fitting that Amy’s Cupcake Shoppe in Hopkins is partnering with Chloe’s Fight Rare Disease Foundation throughout the month of February to raise awareness and funds for rare diseases. Read & watch the Kare11 coverage of Chloe’s Cupcake.

 

The “Chloe Cupcake” was designed by Amy after she heard the story of 2-year-old Chloe who lost her life to the rare neurodegenerative disease metachromatic leukodystrophy (MLD). In 2013 Erica and Philip Barnes started Chloe’s Fight Rare Disease Foundation with the mission of raising funds for research into lysosomal storage diseases as well as awareness for the over 7,000 rare diseases that affect 1 in 10 Minnesotans.

February 28th is Rare Disease Day, so Amy will make the cupcake available in her store from Feb. 1 through 28th. A portion of the proceeds will go to research at the University of Minnesota focused on rare diseases.

To find out more about Chloe’s Fight visit www.chloesfight.org or email info@chloesfight.org. Amy’s Cupcake Shoppe is located on 7th Ave and Main Street in downtown Hopkins. For hours of operations visit  www.amyscupcakeshoppe.com

Prince Deserves to Be Remembered as More Than Just a Rock Icon

Driving home from work last week it was surreal to listen to local news coverage of the live press conference in Chanhassen, MN, knowing that the whole world was tuning in to my home town. Local law enforcement was addressing the public outside of Paisley Park, home of the rock legend Prince who, of course, had just died. The grief for us Minnesotans is unique and multilayered because Prince, while being an intensely private man, was also deeply embedded in his Minneapolis community and its suburbs where he was born and raised. After the renovation of the Minneapolis fixture the Uptown Theater, a local movie critic mentioned in passing that Prince occasionally slipped in to watch a film. (It became my habit after that to scan the audience to see if he and I had the same cinematic taste.) He had his own private table at the Dakota Jazz Club downtown. Some of my friends live a few doors down from one of his rental properties. I had even heard that he would once in a while do some door to door evangelizing for his small church located in St. Louis Park just minutes from my own home.

But nothing has made Prince’s humanity more real to me personally than my recent discovery that Prince and then-wife Mayte Garcia lost a child to a rare and incurable disease in 1996. Prince was virtually silent on the subject, but I read Matye’s words with complete understanding as she talked of how the death of their son, Boy, contributed to the collapse of her marriage. “I believe a child dying between a couple either makes you stronger or it doesn’t. For me, it was very, very hard to move forward and for us as a couple I think it probably broke us.” When my own daughter died I walked the same path. My husband and I were lucky. We made it. But there were ugly, ugly moments, Mayte. And we didn’t have the pressures of fame and public scrutiny that you and Prince had to shoulder.

The tributes to Prince are numerous and I have smiled at some of the wittier recollections of people like Liz Meriwether who had the privilege of working directly with him on an episode of New Girl. But these pieces, as lovely as they are, also remind me that fame is isolating. My own personal journey taught me that grief is isolating and Prince had to deal with both. I don’t know how much of Prince’s personal loss contributed to his need for privacy, but I feel a deep sadness thinking that perhaps his fame made it that much harder for him to grieve for the loss of his child. I wonder if all of the hype and idolizing of him obscured the fact to his associates that at end of the day each and every one of us have this in common; we all suffer.

I also don’t know anything about how Prince grieved. It never occurred to me to expect a Prince sighting in the Minneapolis cemetery where my own daughter is buried. I don’t know when he finally got the courage to take down the swing set in the yard one of his backup dancers said he put up in anticipation of the birth of his child. I don’t know if he could bear to eventually change the play room he showed Oprah into a room with a functional purpose. I don’t know if he ever wondered on Boy’s birthday what life would have been like if he had lived. I don’t know any of these things, but I hope that he found some way to be a parent to his child or at the very least hold Boy’s memory in a sacred place inside him.

Prince’s fans are mourning the loss of a rock icon and a musical genius and, of course, he was these things. But I mourn for him as something far more elemental. I mourn for him as a husband who tried to hold his marriage together in the face of unimaginable loss. I mourn for him as a father who had to do the unthinkable and bury his own son. Rest in peace together, Prince and Boy.

February 29th is Rare Disease Day: 4 Reasons You Should Care

Before my daughter passed away from a rare disease I had never heard of “Rare Disease Day” and knew next to nothing about the impact rare disorders have on society. Over the past few years I have learned that rare diseases play a larger role in public health than most people realize and deserve consideration from the medical community, policy makers, and the general public.

A rare disease is defined by the National Institute of Health (NIH) as any disease that affects less than 200,000 people at a given time. The last day in February is an internationally recognized day set aside to raise awareness of the impact that rare diseases have on society. Here is what you need to know:

1. Rare diseases aren’t actually that rare.
While each individual rare disease affects only a small percentage of the population, there are over 7,000 rare diseases. When combined, they collectively affect 10% of the general population or 30 million people. Of these 30 million people, roughly half are children and 4.5 million of them won’t live to the age of five.

2. Of the 7,000 rare diseases only 4% have an effective treatment.
When my own daughter was finally diagnosed with a rare genetic disorder known as metachromatic leukodystrophy I momentarily felt a sense of relief. The agony of watching helplessly as her health declined and visiting expert after expert who all seemed baffled by her condition appeared to be at an end. Until the neurologist’s next piece of information. The disease is terminal. And there is no cure. While our family was “lucky” to have at least had a treatment option for slowing down the disease progression, there is little to nothing the medical community can do for the vast majority of children diagnosed with a rare disorder.

3. Rare disease research faces practical challenges that, if solved, could shift thinking for how medical research is conducted in the industry as a whole.
There are a number of barriers inherent to researching rare disorders. Patients are often scattered over a large demographic and even finding an adequate number people affected by a particular disease to conduct a well-designed clinical trial can be challenging. Additionally, medical literature describing key characteristics of a particular disease are scarce or non-existent, making it difficult for experts to build on previous knowledge. The current, traditional model of research and drug development that conceives of research results as intellectual property and sets up competition among researchers is unrealistic with such small patient populations. In order to overcome this barrier, some rare disease experts are leading advocates for revolutionary new research models that are more collaborative and open-sourced. This shift in philosophy to sharing vital research results more openly will benefit drug discovery as a whole by potentially reducing the costs and inefficiencies associated with replicating research in drug development.

4. Researching rare genetic disorders will increase the chance of finding cures for more common diseases. 
Many rare diseases of a genetic nature are “single gene disorders”(the result of just one faulty gene). By contrast, many common diseases are polygenic (the result of the interaction of several different genes) and multi-factoral (in part due to many factors such as life-style and environment). The ability to isolate the single cause of a rare disease simplifies the research process since there are fewer variables to consider. Diseases such as Alzheimer’s and multiple sclerosis whose symptoms don’t show up until adulthood must be studied taking into account the many factors that have influenced the disease process over the course of an individual’s lifetime and may benefit from the information that could be learned from similar degenerative rare diseases.

Until the last couple of decades rare diseases were truly neglected in the medical community and by society in general, even earning them the nickname “orphan diseases”. Fortunately, through a combination of legislation and advocacy, more people are beginning to understand why everyone should care about Rare Disease Day.

Thank You!

Thank you for your order of the Rare Disease Day buttons. We will do our best to get them to you promptly so you can wear them proudly with your “Rare Wear” on February 29th. We hope you can join us with your Rare Wear at Insight Brewing that evening for a Rare Disease Day Happy Hour.

Minnesota State House Reception

Wednesday, February 28th, 2018 10-12:00pm State Office Building Room 500N (100 Rev Dr Martin Luther King Jr Boulevard, St Paul, MN)

State HouseJoin us at a State House Reception as we make the voice of rare diseases heard in Minnesota! This session, state legislators will be voting on a bill to create the Chloe Barnes Rare Disease Advisory Council. The council gives the rare disease community a direct voice to our lawmakers. This year’s reception will feature patient advocates, researchers, and legislators who will talk about the issues that the advisory council will address   Sign up here to let us know you can attend.

What is Rare Disease Day?

On 28 February 2018, people around the world living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases. The Rare Disease Day 2018 theme ‘Research’ recognizes the exciting advancements research will be making in the next few years to improve the lives of people living with rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation. Patients and patient advocates use their voice to bring about change that:

  • Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at state, national, and international levels.
  • Increases and improves rare disease research and orphan drug development.
  • Achieves equal access to quality treatment and care at local and national levels, as well as earlier and better diagnosis of rare diseases.
  • Supports the development and implementation of national plans and policies for rare diseases in a number of countries.
  • Helps to reduce isolation sometimes felt by people living with a rare disease and their families.

Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world. The patient voice:

  • Is stronger when patients receive training so that patient advocates are equipped with the skills and information that they need to be able to represent the patient voice at the local, national and international level, within and on behalf of their patient organisations.
  • Is vital because rare disease patients are experts in their disease. In situations when there is often a lack of medical expertise or disease knowledge because a disease is so rare, patients develop expertise on treatment and care options. With this expertise, the voice of a rare disease patient is often more inherent to the decision-making process regarding their treatment or care options.
  • Is increasingly present and respected in the medicines regulatory process, during which patients bring real-life perspective to the discussion. This voice needs to be encouraged to become stronger all along the life cycle of the R&D process, from the early stages of development of a medicine, right through to when the medicine is in use in a wider population of patients. This will help to ensure that medicines are developed more efficiently and in turn will result in patients accessing more, better and cheaper treatments at an earlier stage.

 

Wear Something Rare

Has your grandma knit you a, uhm, unique sweater? Did your sister give you a tie that no one in their right mind would ever wear? What about those great shoes you bought that you want to show off? Rare Disease Day 2017 is your chance! About 300 million people worldwide are living with some kind of rare disease. Of the 7,000 diseases only about 400 have an effective treatment.

Show your support for these individuals by wearing something one-of-a-kind on Tuesday, February 28th and wear one of our “Wear Something Rare” buttons to let your friends and coworkers know why! Contact us or pick up one of the “Wear Something Rare” buttons at Amy’s Cupcake Shoppe.

wearSomethingRareButton

When: Model your “Rare Wear” with pride along with the button on February 28th – you will be able to pick up a button from the location below during the whole month of February

What: A fun dress-up event following a month long campaign to raise awareness for individuals whose lives have been touched by a rare disease

Where:The buttons are available at Amy’s Cupcake Shoppe in Downtown Hopkins

 

 

 

 

In partnership with Amy’s Cupcake Shoppe and NORD
Amy's Cupcake ShoppeNORD logoRareDiseaseDay

No Pharmaceutical Tycoon Should Get Rich Off the Disease That Killed My Daughter

This week the story of Turing Pharmaceutical CEO Martin Shkreli and his hiking of the price of a decades-old pill that treats the serious illness toxoplasmosis from $13.50 to $750 broke. I was outraged as the vast majority of Americans were. But a special wave of nausea swept over me when I read more about this former hedge-fund manager turned biotech venture capitalist. In his biography, characterized by an incessant thirst for wealth and shady business practices, is a fact of personal significance to me. In 2011, Mr. Shkreli founded biotech firm Retrophin with the goal of focusing on medicines for rare diseases.

I lost my two-year-old daughter to a rare and as yet incurable disease. It’s funny how the memory of mind-numbing fear and rat-trapped-in-a-cage desperation lurks just below the surface of a mother’s existence after losing a child. The memory of being unable to do anything to save my child isn’t just a mental exercise. It is a very real and raw sensation that I relive over and over and will my entire life at unpredictable moments. So when I pictured a man like Mr. Shkreli someday holding the key to a terminally ill two-year-old’s only hope of survival, I became literally sick.

It’s easy to vilify this man. His choice to make a 5000 percent return on an old product was obviously pure, unadulterated greed. Only the most naïve individual or an individual who is totally invested in the ideology of free markets at the expense of humanity would be satisfied with his flimsy excuses. Even the trade group PhRMA has distanced itself from his actions in a public statement and other industry professionals such as John Maraganore, CEO of biotech Alnylam Pharmaceuticals, have heavily criticized him.

But this man’s actions put before Americans a case study that should trigger some collective self-examination. This story gives us an opportunity to rethink the principles we as a society operate on that allows a man like Mr. Shkreli to do what he does.

It gives us a chance to ask ourselves if the free-market framework of a product’s value being determined by “what people are willing to pay” should be a significant factor in drug development and the cost of a drug. What a person is willing to pay for a product is great for things like tennis shoes and sports cars.

At the end of the day I can walk away from a new purse. But I couldn’t walk away from the life of my child. Hell, I even bargained with God. I told Him I would give 10-15 years of my life if He would spare my child. If He would have taken me up in it, I know I would gladly have paid for her survival with my very life span. So when “what people will pay for a drug” is a significant determiner of what a business is allowed to charge a woman in my position, how can we rationally think that this won’t lend itself to exploitation?

I know research is expensive. I also know that biotechs and pharmaceuticals take huge risks in investing millions of dollars into products that may, in the end, be ineffective and therefore a loss to the company. All of this must, of course, be taken into account when pricing drugs. But I also know that the pharmaceutical industry is enormously lucrative and drug pricing is anything but a transparent process to the public. While the issue of drug development, research, and pricing drugs to reflect the costs is admittedly complex, there is one simple fact that discourages me. It is possible to get very rich off diseases like the one that killed my daughter.

Believe me, I am in no way claiming to be qualified to argue for specific policies that can best take into account the protection of the sick and dying as well as support innovative drug development. But what I am arguing for goes deeper and forms the groundwork that sound policies must be built on.

I am calling for a change in American values when it comes to medicine and treatments. I am advocating for an underlying societal value that says that suffering, illness, and dying should not be a space in which companies and individuals can amass enormous wealth. If the will of the people of the United States were driven by this value, I have no doubt that we could draft sound policies that would reflect that value and also drive us to find cures.

You see, the fact of the matter is that there will always be people like Martin Shkreli. People who are shrewd enough and unscrupulous enough to know that the real “market value” of desperation for a family with a dying child is whatever price tag their greed wants it to be.

The Zero Sum Happiness Game (Or, What I Want My Daughter to Know About Being Human)

America is a happiness-obsessed society. This observation has been made so many times that it is almost a platitude to say it. Oh, I’m not claiming that we are actually happy people. In fact, most surveys indicate that we Americans are less happy than people in many other cultures. I will leave the explanations for this to people far more astute than I am. But suffice it to say that happiness is a value so enshrined in the American psyche that it even made it into our Constitution. “Life, liberty, the pursuit of happiness…”

Don’t get me wrong. I’m not arguing that the desire to be happy is bad or even unrealistic. But there does seem to be an underlying assumption in popular culture that the ideal to strive for in this life is one hundred percent happiness. One hundred percent of the time. The fact that we must know that this is not rationally possible doesn’t seem to change the fact that we try to be. And we just don’t do very well as a culture accommodating other-than-happy in our everyday lives. We avoid anything that might make us the least bit sad or uncomfortable. And we really wish that other people would avoid sad and uncomfortable topics when they chat with us. So when the lady that always mentions the funny things her dead daughter used to do starts talking about said daughter at a dinner party we smile politely but quickly change the topic. Because what she is talking about is, well, sad.

In the days before Chloe died after a prolonged battle with a terminal neural disease, my husband and I had a conversation with a grief counselor about coping with the future without Chloe. The counselor was an amazingly insightful woman and when we asked her if we should plan on getting on some sort of medication to handle the grief her response was, “Don’t confuse sadness with depression. Your 2-year-old is dying. You are supposed to be sad.” I was supposed to be sad. The phrase jarred me, but it also gave me an immense sense of relief. This crushing, bruising, overwhelming sadness was appropriate. Even somehow necessary. See, the problem with a “being completely happy” goal is that it becomes a zero sum game. What if something so devastating happens that one hundred percent happiness isn’t possible? The alternative is no happiness. Game over.

Admittedly, papering over the deep gashes of my own personal brokenness is tempting. I don’t want to stare at the chasm where my daughter used to be and wrestle with how to fill it. Or admit that I can never fill it. And culture doesn’t make the balancing of joy and pain easy. I find infinite escape hatches from the pain. I can Facebook façade post unpleasant realities away. I can medicate the pain away. Maybe even religious explanation bad-things-happening-to-good people it away. Anything but actually stopping and doing the hard work of learning to let grief and happiness coexist. But there is a resting that comes from admitting that I cannot be perfectly happy and that this deep emptiness will never go away. To really meditate on the fact that there is inherent in human existence pain and brokenness. That ignoring my own brokenness will only lead to more brokenness and isolation.

In the weeks after Chloe’s funeral my oldest child (who was 4 at the time) asked me constantly “mommy, are you sad?” I had made the decision to be as honest with her as possible, and so at first I simply responded with what I truly thought was an honest answer: “Yes, I am very sad, honey.” But anyone with young children knows that if a child continues to ask the same question repeatedly, there is a good chance that the grown-up is missing something and would do well to give a more thoughtful response. And one day I was finally ready for her question.

“Mommy, are you sad?”

(Pulling her up on my lap.) “Yes Eva, I am very sad. And there is a little part of my heart that is sad all the time. But you know what? There is a big part of my heart that is very happy.”

And I proceeded to tell her all of the things (including having her with me) that made me happy. At the end of the list I hugged her and said “So I’ll probably always be really happy and a little sad all the time from now on.”

That is the last time I have had the “happiness discussion” with Eva. I hope it was as formative a moment for her as it was for me. I hope she grows up to be a woman that can deeply grieve the loss of her beloved sister, hate the brokenness in the universe that causes death and sickness, go out dancing with friends, and laugh uproariously at lively dinner parties all at the same time. I hope she learns to gather the jagged shards of loss, disappointment, joy, and happiness that are so mixed together in this universe and not try to construct a perfect life with neatly interlocking pieces out of them. I hope she simply holds the brokenness in her hands. If she learns to do this there is a good chance that she will never be one hundred percent happy. But she will be honest. Some things are better than complete happiness.