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.

The Calliope Joy Foundation was founded in 2013 with the goal of raising awareness about rare and orphan neurologic diseases in children and funding programs related to research and care. Calliope Joy Carr’s parents, Pat Carr and Maria Kefalas, launched the foundation after Cal's diagnosis at age 2 with late-infant onset metachromatic leukodystrophy: a rare, degenerative and incurable neurologic disease.

The Calliope Joy Foundation is dedicated to funding two main endeavors:

· The Calliope Joy Foundation provides start-up and bridge grants to medical professionals who work on orphan neurologic conditions in children. An example of a program that the foundation has funded is the Wellesley College Class of 1989 Children’s Hospital of Philadelphia Summer Fellowship in Neuroscience.

· The Calliope Joy Foundation will provide funding for direct patient and family services for children affected by rare and orphan neurologic disorders. Examples of programs that the Foundation will fund are children's hospice, in-home services for patients and families not covered by insurance, and travel expenses associated with treatment.

Recipients of gifts include:

The Children's Hospital of Philadelphia's Pediatric Advanced Care Team

The Children's Hospital of Philadelphia's Division of Neurology

Cal's Wishes Fund at Abington Hospital's Pediatric Hospice Unit

Hunter's Hope

Wellesley College's Department of Neuroscience

Families around the nation needing financial help to remodel homes, see specialists, seek treatment, or care for children with neurological diseases.

The Foundation welcomes Letters of Intent from prospective grantees and the Advisory Board meets on a semi-annual basis to review proposals.

You can learn more about the Carr-Kefalas family in Alfred Lubrano's front page story for the Philadelphia Inquirer dated March 29th, 2013.

Recognized by the Philadelphia Eagles as a Community Quarterback Finalist, 2013.
Click here to read Cal's mom's essays for Huffington Post and Slate.

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    Saturday, August 23, 2014

    Burning up on re-entry




     
    Cal's godmother Laura and PJ on a late summer visit.  Laura, one of my first SJU students, is expecting her first child in October.  We can't wait to meet Baby Ry-no (a combo of parents' surnames Ryan and Napolitano).  And PJ insisted on giving the baby one of his/her first toys, a wonderful Squishables Hedgehog.
     
     
    It occurred to me that one of the reasons for my anxiety and short-fuse  of late was that I didn't want to return to work.  The old me loved to sneak off to the office to write and attend conferences and engage in intellectual turf wars.  I would scan the employment bulletin for new jobs and consider my next big project. Work was a compulsion.

    Even with Pat's diagnosis, there was a moment where my response was to seek out a better paying job. I could work more...work would be our salvation in the face of cancer's uncertainties.

    My agent called last week and told me that my book had just sold 30k copies . Few academic books ever do that well, and I was struck by how this good news hardly registered.

    In terms of my job , people knew I was underplaced, which meant I would get called to apply for other jobs from time to time. Cornell, Penn State, Drexel had all flirted with me over the years. I once got rejected from a job at Duke, even though I had never applied. Someone had probably just put my name on a list.  No doubt the Search Committee just assumed I would have left Hawk Hill for a chance to be a Blue Devil. And then a few months after the job listing posted. Duke HR told me I didn't get the job, and to this day I don't know how they managed to email me a rejection with such absurd efficiency.

    About a year after my phantom job applications to Duke, Cal got sick.
     
    At Callie's diagnosis, Dr. Waldman suggested I might need to take some time to be with Callie at home before the "horror show" began. But, during that first year after MLD entered our lives, work was still a refuge: forcing myself to teach was a way to not think about Cal a few hours each week. My teaching was not as dynamic or energetic as it had once been, but, most people thought that working was a form of occupational therapy. Certainly, for my husband Pat, work seemed to be something that helped, and that was true for me, for a while.

    But, then, something happened this summer. 

    I spent more time with mothers whose children were as sick as mine. I exchanged notes with women whose children had died. The questions that I had been to afraid to ask were now spilling out of me. Now I could say, with an eery sort of calmness that in the most optimistic predictions Cal has just about three more years to live. And, to be sure, after last winter, there was no question we were on borrowed time. 

    The doctors and nurses caring for Cal published an article about last winter's crises  in it, the lead author, a doctor from CHOP described Callie as medically fragile with a diagnosis of late-infant onset MLD, " a disease " which "patients do not survive beyond age 5." 

    There it was in cold print. I was listed as a co-author because I wrote up the case study. I was now publishing articles about Cal. How strange this was to get a paper accepted in a journal of pediatric medicine after 2 years of ending all my own research projects. Publishing articles was once an accomplishment, now the only writing I do is about my dying child.  

    I doubted that this paper would be part of my professional bibliography.
     And I wondered what the search committee at Duke would have made of my latest citation.

    And yet, even with this sense of losing Cal growing closer,  the summer has been wonderful. I took my trip to St. Lucia and swam in the Carribbean Sea. My older children are beautiful and more extraordinary, my husband's cancer has not returned, and our garden blossomed with vegetables and flowers. Cal laughed and smiled every day, we hardly heard her cry. She sleeps through the night. Her nurses found a groove with her, and, it had been months since I needed to call the PACT at midnight.

    There was much to be grateful for and Pat and I have the good sense to know that.

    Life is good.  We had created the bubble around our family and only allowed people in who understood our world and made it sustainable.

    It is this special world that only exists on 420 Conshohocken State Road.

    But, you see, the problem is that next week, I must re-enter a world with students and people who don't understand what I go home to. I will be asked to readjust to the atmosphere where most people live. People who are clueless and oblivious and will want me to give them good grades, and be on time, and write reports. I will have to be around people who will complain how sad they are that their children don't clean their bedrooms or how hard it is to watch their children leave for college.

    How my heart ached when I saw a mother scold her toddler for running away from her in the store. What I would do for Cal to run one more time. In my dreams Cal is in constant motion.

    Because I will have to leave my bubble, there will be encounters with people who I thought were friends but have diligently avoided me over the last two years since "there was nothing I could say."  Liz Scott warned me that when a child gets sick, you find out who your friends are. And Pat and I been wounded by the people who hid from us. To be honest, we were more overjoyed by the people whom we never guessed would stick around and faced Cal's fate with us.

    This summer, I also witnessed a miracle, or the beginnings of what might be a miracle. And Dr. Waldman and I spent an hour talking, with grave seriousness, about how the cupcakes and Cal could save other children.  What would need to happen to get the Milan trial to America, how we could create a national database of all the children in the US with leukodystrophies and expand the research arm of Children's National to get the currently undiagnosed leukodystrophy cases a name for their disorder.

    A 30k gift to CHOP would be a good start, but Amy was blunt, we would need much more money to get a national database together and prepare hospitals for the dozens of presymptomatic children who now would be seeking treatment with the new newborn screening in New Jersey, New York and Pennsylvania. The other issue was that CHOP was clearly such a major player in the LD world. CHOP needed our help to be a part of a gene therapy trial in the US....this was something everyone would want to be a part of. This would put CHOP on the map, and CHOP loves to be on the map. This was our interests all aligning.

    I told Amy, this is bigger than selling a few thousand cupcakes. And she did not disagree. 

    And yet, as I return to teaching classes, and reading books, and looking at my students fall asleep as I lecture them about  why Emile Durkheim, Karl Marx and Max Weber are great minds that all educated people should know about, I don't want to argue with them anymore. When I see my students bored and restless with the challenging material, I will want to scream at them that they are not doing me any favors by taking time away from my dying daughter and that if they don't want to learn, why should we go through this charade.

    When my colleagues talk about budget cuts and lay offs, I am so weary of pain and grief that I don't even have the energy to walk into the meeting to get the bad news.

    There is a part of me that just wants to leave a voicemail message and say, it's just fine, I will come and teach classes to kids who don't want to be there, collect my paycheck, and run home as fast as I can to hold Cal while I still can.

    It is hard to explain to people living in the real world why wasting my time is so sinful.

    So, I pray for the strength to survive my re-entry into the atmosphere where people will be blind to their blessings, and ignorant of my pain, and I will be forced to use every ounce of my strength to seem normal and okay and fine so we all can go on.

    Sunday, August 17, 2014

    Meet Sive Price


    Meet Sive Price, the founder and designer at Sive Price Jewelry, Drogheda, Ireland.  Sive is 11 years old and wants to use her talents to support kids with neurological disease, so, she has donated her time to this cause. We will be selling Sive Price Jewelry at the Cupcake Challenge and she has already raised more than $100. We are so proud and appreciative of her work on behalf of kids like Cal. Sive is our youngest Red Velvet Sponsor.

    Wednesday, August 13, 2014

    The summer

    It is terrible to see this summer end, because, believe it or not, it's been a really good summer. I missed traveling to Martha's Vineyard and Cape Cod, and except for trips Pat and I took on our own, we have been at home caring for Cal. But, things are pretty good, much better than we dared hope. We have all learned so much over the last few years, and I have gone through being consumed by the fact the Cal would die, to something else now, the realization that she is a miracle, an angel sent to save her family and other children, to the incredible sense she is just too perfect for this world.  There are children who are too perfect for this world.

    This doesn't mean that I have accepted we will lose Cal, but, the aching wish and hope that Cal's life has some greater meaning has taken shape into a firm conviction.  Even as three children with MLD died in a week this summer, i could find hope in watching Hannah Ginion go home  and leave the CHOP ICU and hearing about the miracle of Giovanni Price's gene therapy.

     I have spent time talking to mothers like me and reaching out to the Duchess of Cambridge and asking questions I didn't have the courage to ask two years ago: now I know Cal is making a difference and we are doing something, not just letting this disease happen to us . And, I find I have less and less to say in my blogs. As an ethnographer, I knew my research was done when I kept returning to the same answers to the same question..and, this summer has been like that, overflowing with insight and clarity, but nothing truly new, must more precision and confidence in feelings that were raw and hard to put into words two  years ago.

    So, I will leave you with this image of my Cal. After the selfies of me in the hospital and living in a hospice unit and thinking I would go mad, here is the photo of my beautiful Cal, our inspiration,  the beauty and magic of my mermaid is so obvious to me in this photo. And I think I know what I meant, more surely than I could have imagined two years ago, what this paradox of excruciating joy means. 


    You can see it, can't you? Don't you see it now too?


    Tuesday, August 5, 2014

    Witnessing a miracle

     I sent Giovanni to Italy about 3 years ago and he is still asymptomatic. As you know, this is indeed a miracle. He was the second MLD child ever treated with gene therapy and he is still running around and playing like a normal boy. Now I look forward to Cecelia responding equally well when she gets treated. - Dr. William Rizzo, The University of Nebraska Medical Center


    My husband and I went out to lunch today, no kids, just him and me. It took a while for us to figure out how to talk. Pat was quiet and reserved. He has so much work now, and I worried he wanted to tell me something about himself or the cancer.  But, maybe, he was just preoccupied. It's not as if I don't withdraw and just drift away from time to time.

    Sometimes it's hard to talk about everything that is going on, it is easier to be silent than to speak the truth.  So, Pat and I sat and didn't say much for a long time. Then, we started talking about the kids, we analyzed Camille and her excitement over high school and college. She is so like  me, her mother, jumping ahead to college when she hasn't even gone to high school yet.   I told Pat I had spoken to Camille's guidance counselor and appraised the staff of our family situation.

    Pat and I talked about how PJ had dropped all his winter weight and was tan and filled with energy from long days in the woods and playing soccer at camp.  Pat and I marveled at how Callie was doing better than any of us dared imagine  after this winter. I even asked for OT and PT to come back since Cal was stronger than she had been in months .

    We spoke about the Cupcake Challenge, my favorite topic, and we discussed who would run the VIP area and how he needed to get going recruiting the young bakers for our Next Great Baker contest.There was even a subtle little compliment. Pat indulged me with praise, he was amazed at how my year of letter writing had yielded a list of major corporate sponsors, including exciting relationships with The Philadelphia Eagles, Giant Supermarket, and Whole Foods Market.

    Pat nodded his approval at all that we had done in 18 months. We had sent a student to CHOP for the summer, helped families all over the country, established a fund in Callie's name for the hospice unit, given gifts to CHOP, appeared on the front page of the Philadelphia Inquirer, convened a Board for the Foundation, filed our non-profit paperwork, published essays in Slate and Huffington Post, sold and eaten thousands of cupcakes, received a Community Quarterback Finalist Award from the Eagles, and announced our first request for applications of grant proposals.

     The mural project had failed, but the Foundation had raised  $60k and was already funding projects and seeing ripple effects. And how can we forget the correspondence with Buckingham Palace wishing Callie well and expressing gratitude from  The Duchess of Cambridge for my kind words about her work on behalf of children's hospice?

    Yesterday, I spoke for an hour with the CEO of Hunter's Hope and discussed how we could work together to get CHOP ready for the presymptomatic Krabbe Disease children we would now be seeing once NJ and PA passed revised newborn screening laws to test for the disease as we all expected.  I might have my concerns about this approach, but if the testing would find children, we wanted to help CHOP and the Kelly Family save these children. It was amazing to think we could play a role in helping children who would never speak or walk get the chance to do all those things. What would I give to hear Cal speak again and watch her run after her brother or hug me just one more time.

    Then, I did something that I had wondered I would ever be brave enough to do. Our little Foundation sent money to the Price Family to help them get to Italy and participate in the gene therapy trial. For a long time, I had asked myself if I could save another child if Callie could not be saved. And when Dr. Waldman suggested it last year, I had doubted that I could do it. I resented Dr. Waldman for even making such a request. But, today, on August 5th, I spent an hour preparing a box for the Price Family. I included cupcake stickers, buttons, t-shirts, wristbands, an I-Pad for the long months in the hospital so  Amy Price could communicate with the outside world when Cecelia was on isolation, and a check to help them pay for their expenses in Milan.

    That cardboard box which had sent Cal her medical supplies for her feeding tube bolus bags  was now carrying our investment in a miracle.

    And, while Callie's doctors and I struggled with whether to call it a miracle, given our anguish at not being  able to save Callie, one of Giovanni and Cecelia's doctors wrote me a short note to confirm the children's diagnosis and affirm their need of this gift.  And in his email message, he described Giovanni as a normal little boy who plays and walks and is a miracle.  And, as I read those words, I could not breathe.

     Here was a doctor telling me that this was indeed a miracle.

    Can I tell you what it feels like to behold a miracle? 

    It hurts, it is this electric shock of pain, that isn't unpleasant and doesn't last long.

     This new pain makes you forget how to get air in your your body, and you  can't move.

    You feel as if you are  floating away even though you can't control your muscles. 

     And the miracle's reality is so powerful it takes on a physical form, it is as if you could grab it and pull it close to you.

     And, as you take in the truth of a miracle, the dull, throbbing  pain of everyday  watching Cal with this disease ends, and gets replaced by this  sense that nothing else matters because you have seen something you believed was impossible.

     And you feel something divine and beyond you and you feel like more than yourself, but, not yourself at all. The relief is like getting drenched in a downpour of sweet smelling rain.

    And, for a moment, I could see that Cal's suffering would change the world, and that there was some purpose in it all. This was more than me and Cal and my family...it was every child who had come before her and would come after her. 
     
     I didn't feel like I used to before Cal was sick, but I was calm, and happy, even with  the awareness of my grief.

     Then, I thought of my father, who believed in miracles and was angry when I refused to have faith. So, now I find myself longing to see my father to tell him  he had been right about miracles all along and that Cal and our family and the cupcakes get to be a part of one.....

    Saturday, August 2, 2014

    A note from Buckingham Palace

    In June, I dealt with the 2nd anniversary of Cal's diagnosis by writing a letter to the Duchess of Cambridge to thank her for her efforts on behalf of children's hospice week. Her Royal Highness had her secretary send me a letter thanking me for my kind words about The Duchess' work to help children and expressing her sadness at Calliope's diagnosis.

    Sadly, the Duchess has no plans to visit the US right now but they left things open.

    Someone finally responded to one of my deranged letters. It is pretty amazing.   It is enough to make me into a monarchist...they have a classy operation at Buckingham Palace. Sort of makes Biden look crappy for not writing back. And don't get me started about the Cake Boss not responding to my tweets...