<div>Dear Friends &amp; Family,
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<div>We hope you all had a nice summer, and are starting off the fall and school year on a positive note.
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<div>Last year, we wrote to many of you about our daughter Lyla and her diagnosis of Maple Syrup Urine Disease (MSUD). MSUD is a very rare genetic condition, affecting a small number of babies each year in the United States. People with MSUD cannot properly break down protein, specifically the amino-acid leucine, and even small amounts can be extremely harmful. Elevated leucine levels can lead to serious complications such as lethargy, vomiting, seizures, or coma. Managing MSUD requires strict diets, medical formula, frequent blood tests, and lifelong care, which can also create tremendous social and emotional challenges.
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<div>Since our update last year, we are happy to share that Lyla, now 21 months old, is doing well. She is reaching all of her milestones and her amino acid levels have been stable. That being said, her condition is certainly part of our everyday life. We make weekly menus to track her protein, and still have monthly lab visits to check her leucine levels and monitor her protein tolerance.
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<div>This fall, Lyla is starting a 2’s program —an exciting milestone and the start of a new chapter. Her teachers, caregivers, and peers will learn about her condition, while Lyla learns how to navigate a world that can look very different for her. As any parent knows, toddlerhood is a time of rapid change, and while there will surely be ups and downs, we are ready to support her through every step of the challenging path forward.
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<div>As we enter this next part of our journey, we are fortunate for the MSUD Family Support Group, the leading non-profit which supports those diagnosed with MSUD and their families, and the vital resources it offers to tackle some of these issues. The Support Group, like many non-profits today, have had their own challenges, with a political and financial landscape that has been unlike any in recent memory. We have heard from fundraisers, researchers, and non-profit administrators that it has been one of the more difficult years, if not the most difficult year in recent memory for medical non-profits. It has also been an especially difficult time for charities that support rare diseases with their very limited donor base.
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<div>Earlier this year, the current administration canceled a panel that meets to discuss newborn screening guidance. You may recall, we only learned about Lyla’s condition because of the newborn screening done at birth. We have heard from many families whose children were born 20 to 30 or more years ago that the newborn screening didn’t always test for MSUD. They only learned that their baby had MSUD when the child went into a coma the week after being born. The HHS also canceled its annual rare disease day panel, which was always held annually in February. Nearly 25 million Americans have some form of a rare disease, so it was beyond disappointing and frustrating that this event did not take place.
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<div>Despite these challenges, we know that we can help make a difference for Lyla and others with MSUD. That is why we are again fundraising for the MSUD Family Support Group, a charitable 501(c)(3) organization. And while last year Frannie and I did a walk to raise funds that had special meaning for the two of us, we know this year would be even more special if we had Matthew and Lyla, along with friends and families by our side.
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<div>That is why this year we are teaming up directly with the Support Group and are partnering with their MSUD Moves Initiative. This initiative is to encourage those with MSUD to be more active, healthy, and fundraise while doing so. With that, we are planning a 5K walk in Central Park on Sunday October 26th, 2025. The exact details are being worked out but we welcome you all to join in our fundraising efforts.
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<div>We again want to thank you all from the bottom of our hearts for your generosity, and feel free to forward this to your friends, family, and others who may be able to help support this cause. You can also inquire with your employers about company matching donations. No amount is too small, and every dollar counts.
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<div>We continue to feel so lucky and fortunate for the love and support from all of you, and a special acknowledgement to our parents who continue to be so helpful to us and Lyla.
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<div>With love,
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<div>Aaron &amp; Frannie
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<div>(and Big Brother Matthew and Lyla)
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Carol Bell

John Tamasi

Lucas Caswell

Alan Stahler

Anonymous

Metin Negrin

David Pedowitz

Emily Trapani

Lizzy Sieverding

Bell-Marcus Fundraiser for the MSUD Family Support Group

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