Leukodystrophy: Hitting Close to Home

The annual Caritas Carnival gave Owen Hammond ’25 the opportunity to share his sister Loie’s struggle with Leukodystrophy to Malvern’s whole student body. Her struggle prompted Owen, along with his family, to make an impact on others with this condition. As well as the Hammond family, other organizations and hospitals are adapting to accommodate and address Leukodystrophy as a serious problem in adolescent health.
Leukodystrophy: Hitting Close to Home

This year, Malvern hosted our second annual Caritas Carnival. Led by Mrs. Catania, our Director of Christian service, Malvern was able to give students from local elementary schools a day to remember. Some of the activities at the Carnival included sports stations, a petting zoo, bounce houses (a unanimous favorite), carnival games, and more.


“The mission [of the Caritas Carnival] is for our friars to serve students, [to] serve schools, and to bring joy to these children. This is an amazing campus, and what we offer opens the hearts of our boys. It really does,” Catania explained.

However, the day was more than just the carnival. Once the guests left and the Caritas carnival was over, the day concluded with an impact vote. During the impact vote, selected Malvern students presented on foundations supported throughout the year by our dress-down days. Every first Friday of the month, students can donate money to an organization to dress outside of Malvern’s dress code. Mrs. Catania explains how the presenting students were chosen.


“So then, on the impact vote day, the boys who present are the SLAM members (Student Leadership for Augustinian Missions). Those boys apply to be on that committee [or] are in that club to run the carnival and help with other community service activities throughout the year. So [students] each [pick an organization], do their research about how much we do for that organization [or] that nonprofit, and then they present it to them” Mrs. Catania said.


The winner of the Impact vote was Owen Hammond, a junior at Malvern. Owen represented the Calliope Joy Foundation, a foundation with which he and his family have a close relationship. The Joy Foundation makes an impact by selling cupcakes to raise money. With this money, the Joy Foundation helps patients with a rare terminal illness called Leukodystrophy battle against the heartbreaking effects. Leukodystrophy, also known as MLD, is a terminal disease that affects the brain, restricting the patient’s ability to do simple activities such as walking, sleeping, or even eating. Winning the impact vote meant his foundation was chosen to receive the additional donations collected from students after the Caritas Carnival. When asked what it means to him to be able to share his message with Malvern, Hammond was very grateful.


“Just to bring attention to it means a lot, and people now know that it’s on the radar. Obviously, people know about diseases like cancer, [but] MLD is still kind of on the outskirts, [and] many people don’t know [about it],” Hammond said.


During Owen’s presentation, he courageously shared a touching story of his sister’s losing battle to MLD at age three. Loie was born on June 26th, 2010, and was originally diagnosed with Cerebral Palsy, a condition that affects movement and posture. Cerebral Palsy was a possibility due to Loie’s delay in learning early childhood motor functions. Her parents, however, thought it might be something more, so they took her to the hospital on Christmas Eve at just two years old. This time, she was diagnosed with Leukodystrophy. Eventually, the illness took over, and Loie entirely lost her ability to walk, talk, and eat, and on January 27th, 2014, she passed away. Her original misdiagnosis is why Owen believes the most important change that has been made to fight against MLD is newborn child screenings, along with approving a center specifically for MLD in the nearby Children’s Hospital of Philadelphia.


“The biggest thing we’ve done is get the Leukodystrophy Center approved and newborn screening [approved]. Because what they do is when the kids are born, they can now screen them for MLD” Hammond said.


According to CHOP’s website, they have adapted to create centers in CHOP for all types of Leukodystrophy.


“Several states have expanded newborn screening to identify infants and young children with Leukodystrophies. CHOP anticipates this expanded screening will identify four newborns per week in the region who are at risk of having Leukodystrophy.”


These centers were something previous patients of Leukodystrophy did not have access to, like the Hammond family. Owen shares his opinion of the creation of a Leukodystrophy-specific care center.


“Now they have a building for all different Leukodystrophies, and it’s beautiful. They even dedicate a memorial to my sister every year. So yeah, there was nothing like that available for us, when she was alive,” Hammond said.


His sister’s tragic experience prompted Owen and his family to make a difference. While doing this, his family came across the Calliope Joy Foundation, a charity with the mission of spreading awareness and raising money to find a cure for MLD. The Hammond family then teamed up with the Joy Foundation to ensure that all families impacted by MLD had support and resources.


“As soon as we found out about the Joy Foundation, we wanted to make sure that no family had to go through what we went through, and that was our main message. Having to make sure that no family ever has to see their daughter, son, [or] close friend die of Leukodystrophy,” Hammond expressed.


Luckily, improvements are being made on the national scale as well. Orchard Therapeutics, a global leader in gene therapy, announced that the FDA officially accepted their Application for OTL-200, a form of gene therapy. This specific gene therapy targets MLD in its early stages to hopefully stop all further progression. The treatment used to be available in Italy and not the United States, so the burden of flying there and back was overwhelming. This is why Orchard Therapeutics pushed so hard for the treatment to be made available in the US. Then, on March 18th, 2024, OTL-200 became the first and only treatment for early-onset MLD in the United States.


Bobby Gaspar, co-founder and chief executive officer of Orchard Therapeutics, during a company announcement back in September, remarked on the significance of OTL-200 being approved,


“Today is another significant step forward for patients and families in the U.S. impacted by this devastating and cruel disease who for too long have dealt with the unimaginable burden of going through the diagnostic odyssey, being told there were no treatments beyond supportive care, and then having to watch their child slip away,” Bobby Gaspar, M.D., Ph.D., co-founder and chief executive officer of Orchard Therapeutics, said. 


While March 18th, 2024 was a historic day for Orchard Therapeutics, it was an even bigger day for the MLD community. The Newly approved gene therapy (OTL-200) will play a crucial role in the lives of diagnosed infants. 


Benjamin Navon, director of communications at Orchard Therapeutics, when asked how Orchard Therapeutics felt as a whole, after getting the OTL-200 treatment approved stated,


“With our first approval in the U.S., it was a historic day for Orchard Therapeutics and the team felt an obvious sense of joy, relief, and accomplishment—not for ourselves, but for the MLD community. And while this was the culmination of a lot of hard work and dedication, we also recognize it’s the start of the next phase of the journey to ensure all eligible babies born with MLD in the future can get a timely and accurate diagnosis so they can be referred for appropriate treatment,” Navon said.


However, Orchard Therapeutics’ help with curing MLD doesn’t end there. In order for OTL-200 to be most effective, MLD has to be diagnosed in the early stages. So Orchard Therapeutics, along with many others are making a push for all newborn babies to be screened.


“That can only happen if all newborns are screened for MLD at birth, which is why Orchard Therapeutics is a staunch supporter of adding the condition to standard screening protocols for infants born in every state in the country,” Navon said.


The inspiring story of a Malvern Prep family making a difference to improve the lives of others is not over yet. Owen and his family are still raising money and awareness, continuing to support foundations. As a community, Malvern Prep can support people with Leukodystrophy by raising awareness, supporting community members with conditions like Leukodystrophy, and supporting foundations like the Calliope Joy Foundation. Global medical companies are not the only ones making a difference for patients with rare diseases.


“There have been tremendous strides over the past decade, and we are only looking to make more strides so that no family, like I said, will ever have to go through what we did,” Hammond said.

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