Our Mission

Calliope Joy Carr, age 2, August 2012, on the family's Make -A-Wish vacation to The Winnetu Resort in Martha's Vineyard. Photo by Audrey Le Tesson.



With the passage of Pennsylvania's Hannah's Law and New Jersey's Emma's Law, doctors will be able to save the lives of 66 children born each year with globoid cell leukodystrophy, or Krabbe disease.

With your help, doctors have the ability not simply to cure the disease, but to

ensure these children never become ill. Finding children before they lose the ability to swallow, walk, smile, breathe, and feed themselves is critical for treatment since once symptoms develop there is no way to reverse the damage to the brain.

The Calliope Joy Foundation is helping our partners at The Children's Hospital of Philadelphia save children from this devastating disease and become a national leader in the care of the leukodystrophy family of pediatric, neurological diseases. In 10 years, hundreds of children will be in school and celebrating birthdays

because of what we made possible.

Help us give children their childhoods and

change the world with cupcakes.

#EatCake & #HelpKids









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    Friday, October 24, 2014

    a letter to a friend

     I wrote this letter to a friend who was worried about me, and, then, I said to myself, I should post it on the blog to share with all my friends all at once.


     Sometimes, in my desire to help and endure all this , I just find myself running and I don't give myself time to be sad. I am afraid to be sad and cry. People mistake my mania for amazingness, but, for me, doing something is a great way to avoid facing all of it.

     For me grief has been like this possession that takes me away from all of of this.  So, this conversation we had today was quite helpful. On April 9th and 10th the Leukodystrophy Alliance will come to CHOP to evaluate what the medical teams can provide to the care of children with leukodystrophies....from palliative care, integrated care, and gene therapy perspectives.  In all the excitement over Hannah and Emma's Law, I think I needed to remember that these treatments are still only successful  rarely, and that most of the children will not improve and some will die faster because of complications from the procedure.

    I am somewhat ashamed at myself for getting swept up in the intoxicating belief in miracles. I should know better.

     Our little Foundation now sends families to Italy and we send care packages to families when families lose a child or are having a tough time.   There is so much need, and getting swept with Amy Waldman's enthusiasm because of newborn screening and a chance to save children was a sweet distraction. But, Leukodystrophy is still winning, this is just a step forward, a tiny one with messy implications since the risk of the cord blood treatment could steal away these children's good time and accelerate death.  I

    t is astounding to consider some children might be saved after decades of no hope or no options. But, it will take years before the new gene therapy treatments in Krabbe or MLD become available in the US and many children will die between now and then. I think the thing that has thrown me off kilter is to see the children Milan has helped. No one is saying they are cured, but, when I look at what MLD has done to Cal and I see children who can open birthday presents and go to school, it is not a sense of guilt, but a belief that Cal's life has to mean something propels to host fundraisers and write articles and write letters. In my manic grief, I have come to believe I am supposed to do something to harness my daughter's suffering.  It is the only thing that makes me not check into a hospital and just give up completely. I hear stories of the mothers who just go to bed and cry and give up, and I am frightened for them but then I wonder if I have ever given myself a chance to really feel what is happening. Maybe I have chosen the wrong path.  Maybe going to bed and crying all day is healthier than this superhuman mom trying to change the world path.

    So, anyway, the great news is that Cal is much better, though, we can't get her up to the number of feedings she had before the tube fell out.  But, her energy is good and she is doing better than she was at the Challenge. I fell down on Tuesday in an effort to start walking to work to get some exercise in and I tripped on some uneven pavement and because of the way I fell, tore a ligament.  I fell because I am tired and I tried to act like I could work all do with my chronic sleep deprivation and walk a mile and 1.Being at home all week keeps me alone with my thoughts a bit too much. The5 home with a computer and books. 

    Then, we just go word that my mother-in-law is in kidney failure and she is not expected to live very much longer. So, Pat is heading off to Ireland, missing
    his three month follow up Abramson for his multiple myeloma, and caring for his mom after spending all week bathing and caring for Cal on his own since I can't hold Cal with my ankle all messed up from my unsuccessful attempts at walking to work.

    It's been another crappy sort of week, and maybe I have no business planning fundraisers with Hunter's Hope, but, between holding Cal and crying and worrying about Pat's check ups and making sure my older children are as okay as they can be....a fundraiser with one of the greatest football players of the last three decades who wants to help kids like Cal ain't a bad way to get through the day.  Or, that's what I keep telling myself. 

    Saturday, October 18, 2014

    how am I doing

    I





    I ran into someone whom I had not seen for a very long time,  at least a decade, she was horrified at my weight gain and physical appearance.  People do this double take sometimes when they see me and when I look at photos from today and a few years ago, I don't blame them. No one ever says, "how well you look." Not even in that cursory way people do in response when you compliment them on their appearance.  Even Pat, the guy on chemo gets told he looks good far more often than I do.  But this old family friend,  all she could say was I looked like my Dad, (and God help me, all I could think was, "You mean the 70 year old Greek man with cancer and no neck. That's not good.)  

    The woman, like everyone else who hears our tragedy, wanted to know how I was doing, she had not seen a blog post in a long time. Some women do tragedy with beauty and stoic grace: think Jackie Kennedy. Though, some people manage this facade with pharmaceuticals (think Jackie), I am more into the blubbery crying and Oreos. Even Jackie married a rich and over the top Greek because she could only do that serene sadness for so long. Though, after three years, I do find it's much harder to cry.  There are only a few things left that can push me to tears, and I have them carefully cataloged in my brain and my heart and you can probably guess what they are so there is no need to list them out here.

     To be sure, I have never been one of those women who was going to burn off my stress on a jog like they do in the movies when a bag of peanut M and Ms was at hand. It's hard to look good when you haven't had a good night's sleep in three years and I don't believe I will ever be happy or content in the way I once was when I had three healthy children and a healthy husband. It's been three years since my life was normal and comfortable and secure enough to be taken for granted. I look like hell because even if I am doing great, this is hell and I look like how I feel, even if my actions suggest to neighbors and friends I am just fine if not goddamn amazing. To be sure, the reason for less blogging was that I felt like I was starting to repeat myself, it's two years in, and in the world of leukodystrophy I am like a senior statesman: I have published three articles, including a piece for a palliative care journal, what else do I have to say?  But, here's my most succinct response to what has been on my mind of late.

    The photo on top is Callie from the Cupcake Challenge and the other photo is of a child with Cal's disease.  They are the same age and the only difference between them is that the boy received a gene therapy treatment only available in Europe. There is no newborn screening for MLD so the only way the doctors knew to look for MLD was because the boy's older sister had MLD, the MLD took this other child last year. But this little boy is a miracle, he has no symptoms of the disease, and there have been no dangerous side-effects. Even if this is not a cure, the treatment is a success. But there are  some experts want more time to consider what this treatment is. There is still some skepticism and a good deal of professional territoriality.

    You might be surprised how much I ponder this photograph of another child. This is no longer about just Cal, there are so many children now I know about and mourn. But I treasure these photos of this boy because, while I force myself never to dream of what was or what might have been for my daughter, I do get to enjoy what is possible for this child. I never resent this family or this child for any of it. I never would never want this mother to go through more than she has already endured.  Let me be quite clear here.  More and more, My anger  is reserved for medical bureaucracies and professional egos that keep miracles from getting to all children.  I have a Ph. D. and know US Senators and university presidents, and yet, no one has explained to me with any satisfaction why people must travel to Milan to get a treatment that would save a child from what my daughter has endured. I have no idea why we don't have millions of dollars raised to bring this breakthrough to the best children's hospital in the US. I am not sure why a bunch of mothers and grandmothers, not a doctor among us, must scream so loud to get people's attention.  I don't understand why the people who are are overreacting to Ebola won't help us change the future for these children in way that a peer reviewed journal in Science proved to be effective. I wish people who keep dumping buckets of water on their head would write letters to the FDA. I want to know why 60 Minutes and a documentary film crew have not showed up at my door demanding to tell this story.  I am not sad or amazing today, I am furious and determined….and so angry. So, today, that's how I am doing, holding Cal all snuggled up next to me and staring at a photo of the little boy who has the chance Cal never did.   




    Friday, October 10, 2014

    A letter from Kipper's creator


    This beautiful letter from the author and illustrator Mick Inkpen, the creator of Kipper, arrives.  I wrote to him about how much Cal's love of Kipper has fought off MLD  better than any medicine. Her enjoyment of Kipper is one of the only pleasures of childhood that remain. With Kipper, the Cal before MLD returns to us.


    Thursday, October 2, 2014

    Recovery

    When I run into people they ask me the same question, they want to know if I have "recovered" from the Cupcake Challenge.  Not at all.  The Cupcake Challenge was only just recently cleared out of my living room. And, over dinner the kids offer suggestions about what we can do better next year.  To celebrate the end of our most successful event, I went out and purchased a new moleskin notebook since after two years, the other one is running out of room. 

    Pat and I are behind in grading and letter-writing for tenure folders and evaluations because of all that had to be done in the first few months of classes.  It's hard for me to concentrate on Marx and Durkheim when my mind has been so preoccupied with cupcakes for nearly a year.

    But, the other thing is that extraordinary things have happened in the wake of the cupcakes.  You see, CHOP has organized several meetings to build a center of excellence for the care and treatment of leukodystrophy. Spark Therapeutics and CHOP now want to be the first American team to treat leukodystrophy with amazing new gene therapies that have proven to be miraculous in terms of eliminating all the symptoms of the disease.  There are children with Cal's disease, who were diagnosed when Cal was, who are walking, talking, attending school, and showing no deficits at all. The cupcakes have made CHOP shift course and become part of this cutting-edge work. 

    And so, Pat and I (with the help of Cal and the cupcakes) get to bring together Jim and Jill Kelly, Hunter's Hope, researchers in Italy, families who have been treated in Italy with CHOP and the neurology division, the mothers, grandmothers, and aunts behind New Jersey's Emma's Law and Pennsylvania's Hannah's Law. Our kickstarter grant has done just that, made things happen in conjunction with the newborn screening laws which will mean that children in New Jersey and Pennsylvania will be screened for one of the most common forms of leukodystrophy: Krabbe Disease.

    We estimate 33 to 66 children will be diagnosed  annually with Krabbe, and because of what Callie has inspired, and so many people have done, CHOP will be ready with state of the art treatment and care and research.

    Then it occurred to me that that in the next few years means we could host a cupcake challenge with more than 100 children who get to have a childhood because what we are a part of through selling cupcakes.

    How can I go back to normal when I can now dream of a Cupcake Challenge with all the children the doctors and all the extraordinary people  and children who have suffered so much?

    On July 5th, 2012, Dr. Waldman had to tell us the worst thing a parent will ever hear and the worst thing a doctor has to say.  Now, just two years later, Dr. Waldman will be able to offer hope to families that would have been impossible two years ago. "The whole world has changed." And because of Callie, we will do more than cure this disease, we will prevent children from becoming sick.  Imagine not simply curing cancer, but never letting it happen. That's what my Cal and the cupcakes have done.

    And when Cal was diagnosed, I promised Dr. Waldman that all I wanted to do was live long enough to see the children she could save from Cal's fate.  To be honest, I didn't know if I would live long enough to see them have a meaningful treatment for leukodystrophy.   I never thought I would get to meet the children the doctors had saved.  And here we are, just two years later, seeing that wish come true. At the cupcake challenge, I met two children the doctors have saved. I spoke to a little girl who smiles and walks and talks even though she has Cal's disease. 


    Our Cal will do just what those marketing campaigns for CHOP have long promised, giving hope, giving children childhoods, and making miracles happen. 

    How wrong I was, and how incredible it feels to have been so very, very wrong.

    Saturday, September 27, 2014

    CHOP's official statement on TCJF's first major gift

    On August 31, 2014, The Calliope Joy Foundation, named for 4-year-old Bala Cynwyd resident Calliope Carr, who was diagnosed in 2012 with late-infant onset metachromatic leukodystrophy (MLD), made a gift of $22,000 to The Children’s Hospital of Philadelphia. The funds are earmarked for the Division of Neurology, to build a center for the treatment and care of children with leukodystrophies. The leukodystrophies are a family of degenerative, progressive neurological diseases that destroy myelin, the fatty sheath that insulates the brain’s circuitry. Historically, children with late infant onset MLD did not live beyond the age of five, although many are surviving into the second decade of life with supportive medical care.

    The myelin sheath, the main component of white matter, is extremely complex. Myelin is the protective covering of the nerve axons and acts like insulation surrounding an electric wire. Myelin is made up of thousands of bio-chemicals, each of which affects the myelin sheath in some way. Various leukodystrophies are caused by a deficiency of one of these chemical substances. There are 43 known leukodystrophies, and researchers are continuing to identify more forms of the disease.

    The funds given by The Calliope Joy Foundation will help researchers re-evaluate patients with suspected cases of leukodystrophies and collect more data to better characterize the leukodystrophies that do not have a recognized genetic cause or enzyme deficiency.  Identifying the genetic causes of the disease is an important driver of research and patient care. “Right now, there are some leukodystrophies that don’t have a recognized cause,” explains Dr. Amy Waldman, a neurologist at CHOP. “Sometimes, we can’t give patients a name for their disease, which can be incredibly disheartening to families who are left without a clear treatment plan. This gift makes it possible for us to collaborate with other physicians from around the world to move the field forward. Once we identify the genetic cause or enzyme deficiency, then treatment strategies can be developed. To be able to give a name to a disease, tell families what to expect, and puzzle out the genetic code behind these disorders will allow for us to move towards cures for these individual diseases.”

    Translating cutting edge research into tools for doctors represents a fundamental first step in making CHOP a national leader in the care and treatment of leukodystrophies. The timing of this gift is critical now that New Jersey and Pennsylvania will join Missouri and New York in screening for one of the most common leukodystrophies: Krabbe disease. Finding presymptomatic infants is so important, says Waldman, since there are no current therapies to slow the progression of the disease once children begin to show symptoms. There is also no way to repair the disease’s damage to the brain. With Emma’s Law in New Jersey and Hannah’s Law in Pennsylvania, CHOP’s nationally renowned doctors expect to see more newborns with the disease. Their hope is to give those children — who
    would lose the ability to smile, talk, walk, and feed themselves —a chance to go to school. “This is an extraordinary time for research in leukodystrophies,” says Patrick Carr, Calliope’s father and the co-founder of The Calliope Joy Foundation. “We are so pleased to be a part of the first steps in creating a medical database, transforming research into treatment, and getting CHOP ready to save the lives of the children we will be finding through newborn screening.”

    Newborn screening of Krabbe disease and ALD (the disease Lorenzo Odone, the inspiration for the 1992 film "Lorenzo’s Oil," suffered from) have been championed by Buffalo Bills Hall of Fame Quarterback, Jim Kelly and his wife Jill Kelly. The Kellys’ only son, Hunter, died of Krabbe disease in 2005 and for the last decade, they have devoted their time and energy to make newborn screenings for Krabbe disease mandated in each state.

    By the spring of 2015, CHOP’s doctors will start seeing presymptomatic infants from New Jersey and Pennsylvania will follow soon afterward. And, in the words of Dr. Waldman, “We need to be ready.” Over the next several months, CHOP neurologists Drs. Brenda Banwell, Gihan Tennekoon, and Amy Waldman, as well as Hunter’s Hope and other stakeholders, will gather to form a plan of action to prepare for the presymptomatic children they will be treating. Given the resources, the team has a vision: to create a database of all the leukodystrophy cases, expand cord blood and bone marrow transplant programs for treatment at CHOP, monitor children, train post-doctoral fellows as specialists, and support families and patients as they face diagnosis. In New York, newborn screenings have given children who would not have survived beyond the age of 2 a chance to go to school and play and sing. New York’s Aidan’s Law has found 12 presymptomatic adrenoleukodystrophy newborns in seven months of screening.

    Calliope’s mother, Maria, says, “There is no doubt in my mind that CHOP has an integral role to play in the treatment and care of leukodystrophy patients, particularly with newborn screening laws in New Jersey and Pennsylvania. We are committed to making CHOP a global leader for leukodystrophy care and treatment, and giving hope to the children and families who come after Calliope. We want to share in these families’ miracles.” 

    Thursday, September 25, 2014

    Cupcakes have changed the world

    Let me just say the cupcake challenge is now the highlight of our year. It's like planning a wedding.  Some people might find putting together an event with 5000 cupcakes, 1000 people and about 50 volunteers not exactly comforting, for our family, it is. 

    The comfort comes from the power of bringing a community together. A sociologist friend explained that uniting people around a cause in the wake of tragedy is a gift to the community and those touched by the tragedy. The secret to getting through all this  is realizing this is so much bigger than our family. The other thing, is with all these people around, they relieve the burden of our grief by drowning us in love and children and joy and cupcakes.

      It seems to me that cupcakes are a perfect choice for a fundraiser to cure nightmarish diseases and funding children's hospice.  "Otherwise, it's just too much," the wise Becky Brenner observed, "the cupcakes make it possible for us, particularly the children, to take it all in." Becky's analysis brought to mind the Mary Poppins song, "a spoonful of sugar makes the medicine go down."

    We made a great deal of money, $24,000 is pretty impressive for a single community event with just a handful of corporate sponsors.  More importantly, a successful charity event like this might cover half its costs, an extremely successful one might have 30 percent covered. We covered all our up-front costs with sponsorships, so the $24,000  will be given away to CHOP and our partners. Some of funds must remain in our accounts, but, we will be giving a great deal of money away at our next board meeting.  An excited  Pat declared, "I can't wait to write those checks."

    The sight of 1000 people filling the school was amazing. For me, walking into the school and seeing the volunteers, balloons, raffles, cupcake store, our new VIP area, and the 5000 cupcakes felt like a movie.

     For those of you who know me, these ideas had just been scribblings in a little notepad that I carried around in what is known as mhy gigantic crazy lady purse. There were phone numbers and reminders of people to contact. There are pages devoted to choosing cupcake flavors and letters for sponsors and lists of people who will need thank you notes. There is also an accordion folder by my bed filled with receipts and letters and business cards. Pat holds his tongue if he ever wants to complain about the Cupcake Challenge clutter.

    I knew the event would be wonderful, I was determined for it to be so.

    A friend in fundraising warned me that the second year of events often sees a dip in turnout, I promised myself I would  break the sophomore curse of community fundraising.

    Three months after the first Challenge, I started to put together asks for sponsors.  For nine months, and the children and Pat can attest to the fact, that every free moment away from work and home was consumed with a manic planning.  To get through a bad day, I would order t-shirts or write letters to Marc Vetri and Jose Garces' publicity people. 

    About one month before the Challenge, I let our volunteers and Pat take over the execution.  I must confess to being quite choosy about prizes and the bakeries we work with. The Challenge works with the best businesses that I know people in the Main Line will like. I picked out things I would love to win, and on a few occasions, the money I longed to spend on Cal's new shoes or a new outfit were put to the foundation since Cal doesn't outgrow her clothes and doesn't need to get things children with friends and birthday party invitations and play dates need.

    By the summer, and the coup of the Duchess of Cambridge correspondence, I have gotten really good at writing letters to convince marketing/community outreach departments that this is the charity to support.

    I have figured out how to explain what we do in a one minute voicemail messages and found that it was less about Cal and more about serving children. This year, I didn't tell people Cal was my daughter, they would only puzzle it out if they took the time to read the materials I sent.

    This year's event brought incredible moments I had not been prepared for. I met two mothers whose children have MLD.  I just realized this was the first time I had met other mothers like me in-person. There had been email posts and FB messages, but never face to face meetings.

    But this last summer, I found myself seeking out women like me more and more. And so, much to my surprise, and pleasure, two women came to the event to meet Cal, me and PJ and Camille. I recognized them immediately in the crowd. We embraced and wept. My MLD sisters felt like long-last family members who knew everything about me without having to be told anything. There were no awkward moments or clumsy questions, being in their presence was a relief, since, they understood all of it like no one else.  I fussed about their children and they were overwhelmed with Cal's beauty and the way the community had come together. These women praised me, too much, for putting together this event. And while I assured them that my way of dealing with MLD was not necessarily the best plan for everyone, they understand how much doing something and being surrounded by people who love and care for you could get you through the nightmare. I was flattered they believed I had shown them a way to survive this. Both women spoke of how their time at the Challenge made them want to start a foundation and help the doctors and other children in their own children's names. One of the women, who had pursued gene therapy in Milan, was particularly overcome with the sense that the chance to save her children with the miracle of the Italy treatment obligated her to ensure no other children would die. And when she saw Cal, this mother knelt down and just caressed Cal, and took in with love and pain that overwhelmed me. For  moment,it was like Cal was her child too.  Looking at Cal was the future she had fought so bravely against, a future she could not be certain would not come, but at least, through her pursuit of a miracle, she had bought her children time. And, as I have said to all the women who took their children to Milan, parents of the children who could not be saved don't begrude them their miracle, their miracles heal us. That's why I long to share in them.

    I cried Saturday more than I had planned. My friends from college surprised me, Lynn drove 5 hours from Pittsburgh and Jill and Christine flew in from Boston just for the day. They kept my mom company and hugged me so hard that I just wanted to collapse in their arms since I knew they would never let me fall to the ground.  I think it was Jill who handed me an envelope with a note and a check for $5000.  The money was amazing, but the fact they had come to be with me and meet Cal, and face the horror if it all overwhelmed even more than the generosity of this gift. My mom broke down when she saw the college students of three decades ago taking time out of their lives to be with me on this day and meet Cal. Friends came from DC and drove for hours just to be there. Someone told me you could not find parking around the school for blocks.

    All of Cal's doctors and nurses came. The VIP area was filled with the dozens of people who had
     cared for her over the last two years. Some had not seen her in months, and they tried hard to disguise their alarm at the disease's relentless progression.

    The teachers at Cynwyd worked hard to be sure that the plan from this year would be easily replicated for years to come. The Cynwyd principal, Dr. Martino, told an exhausted Pat, "We want you to do this for 20 years." And when I said to Ms. Ruzzi, the guidance counselor, how this was our last year as  a parent of a Cynwyd student, she smiled and said: "You all are a part of this school forever. You are never leaving." So, here was yet another  gift of solace and love. Cal might never get to be a student in Cynwyd, but, our family would never have to leave. Cal and our family will have a place in this school for as long as we want. And then I realized that the school staff had taken such a strong lead in this year's planning since they wanted to be able to carry on if something happened, and Cal was sick...or something else, made it impossible for us to do the Challenge's heavy lifting. There are contingencies put in place so that even if our sweet Cal is gone, the Challenge will go on.

    The thing that overwhelmed everyone was the feel. Even people who didn't really know what the Challenge was for, there was still some confusion about the Foundation and whether we were raising money for ourselves. Even some of the student volunteers from SJU didn't realize I taught at the University, but so many people spoke of the outpouring of love. The incredible feeling of the event.
    I am sure there are more and better ways to make money, but this event is something more.

    The best way to sum it up is to see how exhausted, in a happy way Pat, the kids, and I are after the day.  PJ gets to beam with pride, Camille comes out of her shell, and we get to be more than the sad family with a terrible tragedy, we are the family whose community has come together to be a part of something bigger than all of us.  It is the beauty and love that is the only antidote  to grief and loss.  It is wonderful because even if we lose Cal tomorrow, she has already changed the world and accomplished so much.