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.

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.

Recognized as an Unsung Hero by Pennsylvania State Senator Daylin Leach.

Click here to read Cal's mom's essays for Huffington Post and Slate.

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    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.

    Monday, September 22, 2014

    We raised $24,000 at the 2014 Cupcake Challenge

    Get ready for this, we think we tripled last year's Challenge fundraising with over $24,000 in a single day.

    Every cent will go to fund research, serve children, and support families.  

    *CHOP's Pediatric Advanced Care Team  provide home-based care to medically fragile children with life-threatening illness, care that is not provided by insurance. PACT has made it possible for Cal to be home and have the best quality of life possible by avoiding extended hospitalizations and managing her care with doctors and nurses who are available 24/7.

    *CHOP's Division of Neurology will work to bring cutting-edge research and life-saving treatments for diseases that will claim the lives of children before age five. We are working to make CHOP a national leader for caring for children with deadly neurological diseases such as leukodystrophy.

    *Cal's Wishes Fund at Abington Hospital's Kind's children's hospice unit provides special gifts like plane tickets for family members, holiday celebrations, and meals to support families caring for children at the end of life.

    *Cal's Cupcake Care Packages with toys, books, notes, and special gifts get sent to children all over the nation when kids and families face extended hospitalizations.ckages with toys, books, notes, and special gifts get sent to children all over the nation when kids and families face extended hospitalizations.

    We could not have done any of it without all of you. So thank you. Cupcakes will change the world.

    #EatCake & #HelpKids.

     I will take three months off and start planning for next year.

    SJU Volunteer Crew Chiefs: Giulana Carella and Colleen Cruice.

    Cynwyd Elementary teacher Ms. Rebecca Brenner and her husband, Joel Brenner, in the VIP area.

    Monday, September 8, 2014

    Next Great (Kid) Baker

    Are you a kid 18 or under who loves baking? 

    Enter the 2nd Annual Kids' Cupcake Challenge  to support children 's hospice and pediatric neurology research. Our panel of professional judges will be in search of talented amateur bakers. #EatCake & #HelpKids.

    The cupcakes arrive on Sept. 20th.

    Saturday, August 30, 2014

    We are so close

    This is an incredible time for advances in pediatric neurology, namely leukodystrophies.  First, New York, New Jersey, and Pennsylvania will all be screening newborns for a variety of diseases including two leukodystrophies: adrenoleukodystrophy  (ALD) and Krabbe Disease (globoid cell leukodystrophy). At this time, there is no newborn screening for Cal's disease, metachromatic leukodystrophy, and other forms of the disease, but researchers are working to get as many effective newborn screenings available.

    With mandated screenings for New York's Aidan's Law, New Jersey's Emma's Law, and Pennsylvania's Hannah's Law, doctors will find more preymptomatic children everyday.  Armed with information about who these children are (Aidan's Law has found 12 children with ALD in just 7 months), our partners at The Children's Hospital of Philadelphia will need financial support to prepare for this new world where we will find children before they get sick. Even now, The Children's Hospital of Philadelphia is one of the East Coast's major resources for treating and caring for kids with leukodystrophies, but they will need our help to become a center of excellence for the nation. These newborn screenings mean doctors can pursue the treatments and research that will give children -who now face death sentences - the chance to walk, run, sing, dance, talk, attend school, and live.

    Unlike any other disease, children with these neurological disorders must be treated before the symptoms develop since doctors have no ability to reverse the damage to the brain once it occurs. However, with revolutionary new gene therapies and cord and blood marrow transplants, children who would not live beyond the age of two get a chance to grow up. In some cases, doctors are not just seeing the disease slow down, doctors are making miracles possible, the promising new treatments the TCJF supports actually prevent these diseases from stealing our children's lives and give them a chance to have childhoods.

    Doctors say we don't know if these are cures, but, these treatments represent a hope families have not dared imagine before now.

    But, let's be honest, miracles are not easy or inexpensive.

    Our partners need to get the word out about newborn screenings, encourage more states to adopt them, and help hospitals develop the best protocols for the children the newborn screenings find.Even with children who have not developed symptoms of the disease yet, these children and their families will require years of monitoring and care, and researchers and doctors working to get  promising new therapies to these children as soon as possible.Right now, the most exciting treatments are not even available in the US.  We need to change that given that newborn screenings will be giving us a chance to save children whom, without treatment, will die.

    To be sure this is what Cal and all the children we have met have inspired us to do.

    This is why we sell our cupcakes, children's lives depend on us caring about these diseases.

    Because we live right next door to one of the finest children's hospitals on the planet, we know -first hand- how The Children's Hospital of Philadelphia is a place where extraordinary things happen, it is in our power to prove that cupcakes can change the world.

    We are so proud The Calliope Joy Foundation has established a fund with a $27,000 gift to the Children's Hospital of Philadelphia to build a center of excellence for leukodystrophy treatment.

    Photo courtesy of Tammy Stephens Clayton.