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.

"An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide. Most pediatric neurological conditions fall into this category, even though, taken together, this family of diseases kills thousands each year. The CJF's mission is to push new treatments and therapies, support families caring for these children and offer hope to those who come after our daughter." Maria Kefalas, Founder

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.

Recent Posts

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    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...

    Friday, August 1, 2014

    A Post by Liz Scott

    Remembering Alex, 10 Years Later - Liz Scott

    My daughter Alex died from cancer 10 years ago today, August 1.
    I've been referring to 10 years a lot recently as this summer marked a decade since Alex challenged the world to help her raise $1 million and took a final stand against childhood cancer. She may not have won her battle in the traditional sense, but certainly prevailed by reaching this incredible personal (and really professional) milestone of raising $1 million before losing her life to the disease just 10 days later.
    I can't believe it has been 10 years since Alex voiced what we thought was an unreachable goal, and she proved that even the impossible is possible, with the help of others. It seems implausible that this was a decade ago, it seems like a lifetime, and also just like it was yesterday.
    In certain ways, time has stood still, and in our hearts and minds Alex remains forever 8 years old. Her beautiful smile is frozen in my memory, the feel of her hug is something I struggle to remember and long for, and the simple moments of each and every day with her are harder and harder to reach in the corners of my memory. The missed milestones have accumulated too -as this past June, Alex's classmates graduated from high school, something that Alex will never have the privilege to celebrate. And now, many of these classmates are shopping for their dorm rooms or preparing for whatever their plans are this fall. This has been weighing heavily on my mind, and not because I feel sorry that I didn't get to see my daughter in her cap and gown, but because I feel sad for Alex and all that she has missed.
    Alex did not have the chance to live the life we all want for our children-one that allows them to dream of their future and then reach for it, or one that simply allows them to live a long and happy life. Alex never had the opportunity to learn how to drive a car, go to prom, travel to faraway places, or experience many of the things that we would think are normal, and even boring, events as we grow up. I'm sorry for Alex in those ways, but if Alex taught me one thing - it was to be grateful for what we do have, and not for what we don't.
    Even though Alex's life was short, she did have the chance to dream big, and prove that everyone is capable of making a difference in the lives of others. I still marvel over how selfless she was, how, when she realized that her own dreams of a future were not going to be fulfilled, she still had the grace and courage to make sure that a bright future would be possible for children like her. She dreamed of going to Paris, and I'm sure wearing a beautiful dress to prom, but she also dreamed of those things for others and because of her dedication and dreams, she has given children with cancer a precious gift - hope that they will see the milestones that she did not.

    One of these children is Edie Gilger, one of our adorable childhood cancer heroes featured in a new video that I'm pleased to share with you today. Watching Edie kick a soccer ball, jump into a pool and put haphazard ponytails in her Mom's hair fills me with such joy and hope as I realize that this is Alex's legacy. Edie has had the opportunity to be a typical 5 year old and beat her "monster" as she calls it because of the treatment she received that was made possible in part to research funded by Alex's Lemonade Stand Foundation. So many moments in the video bring about laughter as well as tears, although I'd have to say that my favorite part is when Edie's mom Emily says, "Our friend Alex saved her," which Edie echoes saying, "my life was saved."
    To see and hear firsthand how Alex's life has played a part in making other children's dreams possible, is really something to celebrate and a gift that I cannot thank you enough for making possible through your ongoing support of ALSF. From the bottom of my heart - thank you.
    And, as always, I thank Alex, for her life and inspiration. I love you and I miss you so much.