Our Mission

The Calliope Joy Foundation's mission is to support families, research, and improve care to children affected by leukodystrophy (a family of inherited white matter diseases). We started out selling cupcakes for $1 each in a school parking lot, today we fund Cal's Care Packages for children facing extended hospitalizations, travel grants for families seeking treatment with specialists far from home, Cal's Wishes Fund, research fellowships and, on May 15, 2015, we celebrated the launch of the first Leukodystrophy Center of Excellence in the United States housed at the world-renowned Children's Hospital of Philadelphia. Learn more about us by listening to our co-founder Maria Kefalas and pediatric neurologist Dr. Amy Waldman's recent interview for NPR. The CJF is a registered 501(c)(3) with tax id no. 90-1005140. No one draws a salary for their work on behalf of the CJF.

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    Monday, May 18, 2015

    Photos from Every Step Walk Philly and An Evening with Jim and Jill Kelly at The Rittenhouse





    Two years ago, when we started out, we were selling cupcakes for $1 each in a parking lot and we didn't have money to pay for a face painter at the first Challenge. Then, on Friday night, we got to stand in front of hundreds of people at the glittering Rittenhouse Hotel and share the news of a Leukodystrophy Center of Excellence at The Children's Hospital of Philadelphia. We introduced people to the amazing children who prove miracles are possible for this disease. Our supporters now include Thermo Fisher, Goodman Properties, Wawa, Wells Fargo, UTRS, Dreifuss Fireplaces, CBS Radio, Giant Supermarkets, The Vetri Foundation and The Philadelphia Eagles. Our guests for the evening included ESPN personalities and two NFL Hall of Famers.

     Thank you for everything our friends and partners have made possible. Thank you for being inspired by Cal and children like her.

    Jill, Erin, Camryn and Jim Kelly

    Our great volunteers Lisa Sonnenborn, Liz Scott, Mary-Ellen Schlaak, Jamie Amen and Gina Pinotti.

    Jim and Jill Kelly with members of the Vivian family.

    Jim Kelly clowning around with our junior volunteers Will Schlaak, Ella Fox, Hugh Shields and PJ Carr.
    Jill Kelly presents the Kelly Tough Inspiration Awards.



    We raised over $7000 with Jim Kelly giving guests the once-in-a-lifetime chance to catch a football.

    Ella Vivian with her mom Becky on left and friend.

    Recipients of the first Kelly Tough Inspriation Award, the Daniels Family.

    Co-founder of the Calliope Joy Foundation, Pat Carr, with Susan, Daniel and Daniel "Little D" Sullivan.

    ESPN's Sal Paolantonio kicking off the night as our master of ceremonies.

    Dr. Brenda Banwell and Dr. Amy Waldman announce the launch of the Leukodystrophy Center of Excellence.

    Eli and Ella Vivian, among the first children in the world to receive a gene therapy treatment for leukodystrophy, were among the night's very special guests and received autographed balls from the guest of honor, Jim Kelly.

    The Kellys leading the 600 walkers through Philadelphia's scenic Fairmount Park.
    Jim Kelly greets Zach, who has Krabbe disease leukodystrophy and received a cord blood transplant, at the Every Step Walk Philadelphia.

    Saturday, March 28, 2015

    Meet Emily Cockey- The Class of 1989/Calliope Joy Foundation Summer Fellow in Neurology at CHOP








    I am excited to have the opportunity to spend the summer working with Dr. Waldman through the Calliope Joy Foundation and the Children’s Hospital of Philadelphia. As a graduating pre-med neuroscience major at Wellesley College, I know this will be an amazing opportunity to gain insight into the medical profession, the inter-working of a hospital and most importantly, to gain experience working and engaging positively with pediatric patients and their families. I have a strong interest in pursuing a career in pediatric neurology and this summer I hope to learn more about the profession by shadowing Dr. Waldman and by speaking with other physicians at the hospital. I also hope to broaden my clinical research experience and am excited to learn about and to help advance leukodystrophy research. I am grateful for this opportunity and would like to thank the Calliope Joy Foundation, Dr. Waldman and Wellesley College for making it possible. - Emily Cockey, Class of 2015, Wellesley College

    Saturday, March 14, 2015

    The loneliest moment

    “The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.”
    ― F. Scott Fitzgerald, The Great Gatsby

    I came upon this quote in my copy of The Great Gatsby recently. It is a feeling I still remember so clearly from three years ago. And now, I find one of the most meaningful parts of my life is guiding other families as they collide with the news their child has leukodystrophy. I regularly relive this loneliness with strangers as their worlds fall apart. It has taken me years to understand that the cure is so heartbreakingly simple: you just need to show people they are not alone. 

    Life is not measured...








    I am a sucker for an inspirational quote these days, and this one just stuck with me.  It explains our life with Cal.


    Everyday Cal wakes up,  I am overcome with gratitude.

    Cal's life is not what it was supposed to be, and it will be far shorter than we would have hoped, but because of this and so many other truths, my daughter steals my breathe away each day.

    Lately, when people are brave enough to ask how Cal is doing, my response is: "Cal is doing better than we might have expected."

    Most people don't understand what that truly  means, but families who have lived with this illness and the doctors and nurses who care for Cal surely understand. There were times in the last few years we thought we might lose Cal. Her declines were like nose-dives that we would turn out of.

    And yet, here we are with spring coming and Cal's third anniversary of herdiagnosis approaching and she smiles and laughs each day.

    And, with the way Cal has taught me how to be grateful and brave alongside our sadness, the things that take my breathe away increasingly beyond my own family.

    Just yesterday the 7th child we have worked with got admitted to the gene therapy trial in San Rafaelle.  BBC is working on a documentary about the sixth child and his family, and dealing with the sacrifice of an older child to save the younger. This sacrifice is one of the unique cruelties of these diseases.

    Over the last year, every child that has gone to Milan with the Foundation's help has been our investment in a miracle: we care for the Milan families like they are our blood. For each family we send a travel grant of $1000.00 per child and two care packages over the months in the hospital so far away from home.


    When I tell my friends at the Post Office why I am packing up boxes with toys and books headed to Italy, the weary people working there bring extra care and attention to their tasks. After all, everyone wants to be a part of a miracle. 


    The latest child to get admitted is a sort of turning point as well, and her story has taken my breathe way for a different reason. Another MLD family got us in contact us to alert us to a  four year old  newly diagnosed child, and the family wanted our advice about Milan.

    This would be the first time I told a mother about Dr. Biffi and  her team. The doctors working with the family had not heard about Milan and told the parents to take their child home from the hospital since there was no nothing to be done.

    My suggestions must have seemed like a complete shock. I told the mother, "There is no time to waste. While a symptomatic 4 year old would not be a clear cut decision for Dr. Biffi, there was a treatment available. Children who should be in the end stages of the disease were showing no neurological damage. We could not say it was a cure, but it was a chance, a real chance."   I found Dr. Biffi's email and told the mom that I had met the children who had gone to Milan and spoken to doctors who worked with the family, so I could say this for a fact.  I think I even might have written, " if I were you, I would get on the next plane to Italy with your daughter the minute Dr. Biffi agrees to meet with you."
     

      I did not hear from the family for months. Then yesterday,  a note from another family got posted to my Facebook page. I was being thanked for getting the family "in touch with the right people."  The mother would later recall how a phone call changed their life, and it took me a while to realize how I had made this phone call. . When I went through my emails, I could see I had called and given Lindsay all the information I had.  With Bailey I would get to do what I longed to have done for Cal had I had the chance she had now.

     Not long after the conversation I , as it turned out, this family had left Maryland  and returned to Indiana. 
    It seemed that the family had worked to see Dr. Biffi, and after months of waiting and hoping, Ospedale San Rafelle's world renowned gene therapy team invited her for a final evaluation, and on Sunday March 15th, the doctors will start treatment.

     I wrote the mother immediately to tell her about how we would send a travel grant. She was so grateful and surprised by the help we could offer with the care package and money. Things had moved so quickly, she never taken us up on the offer of help from the Foundation. Most newly diagnosed families are like this, they just keep running and hardly even process our offer of assistance until I reach out to them again to tell what we can do.

    I was sitting in the car when I saw the note expressing gratitude for me getting this family "in touch with the right people" and read about how the family had moved back to Indiana when the doctors told them their daughter would die. And now, because of a chain of events, in which Cal played a key role, this family was on a very different journey.

    It took me a while to process how a chance encounter with the grandmother of another MLD family had led them to the Foundation website, me,  and then Dr. Biffi.   Of course, I am not the doctor or a researcher who could win the Nobel prize, I am just a mom who raises money by writing letters and selling cupcakes.

    Regardless, I still found myself crying because I had had the chance to play a small part in this family's chance at a miracle, I could be a part of their hope. 

    The whole story  has demonstrated once again how Cal has made it possible for me to be extraordinary. And, her secret for changing me has been that she takes my breathe away each day she is with us.


    That's a pretty huge thing  for someone as driven and intense for me to figure out.

    And the insight I have now calms me.

     And so, here we are three years after the life I wanted for my family and my daughter was decimated...and in its place is a life that takes my breathe away each and every day.

    And on incredible days like yesterday, I can sit in the car and have a child I have never met take my breathe away because of what my Cal has made possible.
     

    Sunday, March 1, 2015

    Why I love kids so much (now)




    I have a confession to make, until very recently, I was not great with kids.

     My sisters Nicole and Cathy, as my most relentless fact-checkers, would tell you how I was a dreadful big sister, utterly disinterested in my younger siblings, babysitting, and playing with babies. I liked dolls, not the real things.

    When my mother brought home my youngest sister I was 5. I remember stating matter of factly  how Nikki looked like a doll and then leaving the room. You see, Nikki had ruined my Christmas by being born on December 23rd, and so my mother (aka Santa) could not get the presents under the tree in a timely matter: I was annoyed.

    For quite a long time, children were a mystery I was not too interested in solving. Even as a child, I preferred the company of adults. I was one of those people who talked too much and too loudly to children, acting as if the typical three year old was someone I might meet at a cocktail party. Instead of chatting about politics or music, we would debate their views on the Tellytubbies and the significance of that weird, smiling baby.

    When I had my own children, I got better at understanding children and caring for them, but, I was still happy to hand off a baby to my friends or a sitter.

    One day several years ago, a long retired secretary at my office went on and on about how she loved caring for her "grandbabies." Her sixties and seventies would be consumed by the joys of raising children all over again. As a mother of young children,  I was counting down the days until I never had to change a diaper again. In my imagined future, I cast myself as the cool grandmother who travelled and sent funky presents and postcards, I would not be trailing along for every sporting event and birthday party.  A professor friend encouraged me in this view: "you can get back to writing and being a scholar full-time when they get to 4. You will be able to write all the time." And, for a long time, this was something I looked forward to.

    And then, when Cal got sick, all I wanted to do was be around Cal and hold her. I now hated myself for not savoring every moment with my older children when we went to the park or they learned to tie their shoes. I had been so inpatient for potty training and kindergarten to liberate Pat and me. But now MLD had revealed to me the errors of my ways and I was so angry with myself for missing the best parts of parenthood.

     Once I realized MLD could take all the things that I had taken for granted, in a moment, I found myself overwhelmed with the wonder of children.

    Every child, from the one one having a fit in the supermarket or to a  child who was ill in a hospital bed, seemed just so magical and wonderful. I wanted to hug them all, and, when the children saw me, they all laughed and smiled and wanted to play. They seemed to recognize my joy at being in their presence, and, much to my amazement, they responded to it.  Now, I find that holding babies and making them smile, things that I once had so little interest in doing, bring me immense pleasure. I am never frightened or annoyed or overwhelmed by children.

    [Note: this is not to say I am some saint who never gets upset with Camille or PJ, but, it is different now. Cal is about a close to a saint as any human I have ever encountered, so maybe her sweet perfection has just taught me be how to tap into the amazing parts of me.  I might be tired or exhausted or overwhelmed, but, no matter what is going on, I can never forget how my children could be taken from me so it is impossible to take anything for granted. And when you realize how fortunate you are to be telling the 15 year old to do her homework or reminding the 11 year old to practice his viola or stop playing X-Box, you just can't be annoyed or angry the way I once was].


    And after three years of living with Cal's diagnosis, and resisting the idea of being around other children like  Cal, fearing the pain would be too much, I now find that I can't get enough of the children whom I would turn away from in the supermarket or tell my children not to stare at.

    So many people have commented on this photo of Daniel and me, and I am struck by the obvious and rather instant connection.  You see, not very long ago, I would not have been any help to a mom like Susan or me. Not very long ago, I would never have thought of myself as someone who rushes across the room to grab the child and hold them and comfort them and make them smile. I was not the mom who understand how to connect with a child who doesn't speak or smile or laugh. 

    I might have been a mother but I was not really maternal, I loved my own children but the rest of the world's children were not my concern.

    And so, I am just amazed how much Cal has changed me.