In this episode of Gods and Genes, Host Amber Sher, MS, CGC, sits down with Daniel Peach to learn about how the Cure Sialidosis community is transforming the narrative of rare diseases through perseverance, science, and groundbreaking gene therapy research, offering hope and solidarity to families worldwide.

This episode is a special episode dedicated to the global charity event: Podcasthon 2026. We’re delighted to be one of 2500 podcasts taking part in this initiative and will be highlighting the amazing work done at Cure Sialidosis 501(c)3 non-profit. 

Learn more about curesialidosis at curesialidosis.org 

Learn more about Podcasthon at podcasthon.org 

Guest Bio

Dan Peach is a rare disease advocate and Research Lead with Cure Mucolipidosis, a nonprofit dedicated to finding treatments for mucolipidosis and related lysosomal storage disorders, including Sialidosis. Drawing from his own journey with Sialidosis and the loss of his brother Anton, Dan has turned deep personal grief into a lifelong mission to connect families, accelerate research, and make sure no one faces this diagnosis alone. Through his leadership with Cure Mucolipidosis, ISMRD, and other rare disease groups, he helps build bridges between patients, clinicians, and scientists, championing projects like gene therapy and global patient registries that bring real hope within reach. Dan Peach is the driving force behind Cure Sialidosis, a nonprofit community he helped launch to connect families and fund gene therapy research for Sialidosis.

Episode Summary

Most people think rare diseases are unsolvable mysteries, but Dan Peach’s story proves otherwise. When diagnosis gaps left his family in the dark for decades, he refused to accept “no treatment” as the end of the line. 

Today, discover how one man’s relentless pursuit of hope is inspiring groundbreaking research in Sialidosis, a devastating yet ultra-rare genetic condition affecting fewer than 5 million people worldwide.This episode dives into the complex science of lysosomal storage disorders, explaining how tiny cellular trash collectors go awry and cause progressive decline. You’ll learn about the critical role of enzymes like neuraminidase 1, the genetic mutations behind Sialidosis, and the promising gene therapies on the horizon. But today’s episode is not just a biology lesson–it’s a story of perseverance. 

Dan Peach shares his journey from diagnosis frustration to pioneering patient advocacy, rallying a global community of families who believe that, despite the odds, a cure is possible.We also explore the profound spiritual and emotional resilience within the Sialidosis community. Hear how faith, hope, and collective activism fuel breakthroughs, even when modern medicine has yet to find a cure. Dan’s unwavering belief in science paired with his faith-driven resolve exemplifies the power of advocacy and human connection in overcoming the darkest diagnoses. Perfect for healthcare providers, rare disease advocates, and families confronting similar diagnoses, this episode illuminates how relentless action and compassionate support can rewrite the narrative of otherwise terminal conditions. If you believe that hope and science can intersect to transform lives, this story will inspire you to see the possibilities beyond current limitations. Join us as we celebrate the human spirit mobilized for change–because in every tiny cell and brave heart, there lies the potential for extraordinary discovery and healing. Tune in to learn how one community’s fight for a future without Sialidosis is changing what’s possible–and how your voice can be part of this vital movement.

Learn more about Cure Sialidosis at curesialidosis.org

See our Podcasthon link: https://podcasthon.org/podcaster/gods-and-genes 

Be sure to subscribe to Gods and Genes on your podcast app, here on Spotify and here on Apple Podcasts, so you don’t miss future episodes exploring belief, meaning, and medicine.

Episode Topics Discussed:

Sialidosis, Lysosomal Storage Disorders, NEU1, neuraminidase 1, cherry red spot, gene therapy, oligosacchariduria, Cure Sialidosis, enzymes, biochemical Analysis, enzyme replacement therapy, chaperone therapies, sialic acid, progressive vision loss, myoclonic seizures, ultra-rare disease, sialyl-transferase inhibitors, religiosity

Relevant Resources: 

See our Podcasthon link: https://podcasthon.org/podcaster/gods-and-genes 

Bužgová R, Kozáková R. Informing patients with progressive neurological disease of their health status, and their adaptation to the disease. BMC Neurol. 2019 Oct 25;19(1):250. doi: 10.1186/s12883-019-1488-y. PMID: 31653233; PMCID: PMC6815047.

Domaradzki J, Walkowiak D. “In God We Trust”: An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland. J Relig Health. 2024 Dec;63(6):4079-4109. doi: 10.1007/s10943-024-02095-4. Epub 2024 Aug 5. PMID: 39103591; PMCID: PMC11576783.

Kaiser, J. (2025, May 15). Gene-editing therapy made in just 6 months helps baby with life-threatening disease. Science. https://www.science.org/content/article/gene-editing-therapy-made-just-6-months-helps-baby-life-threatening-disease

Patterson AM, O’Boyle M, VanNoy GE, Dies KA. Emerging roles and opportunities for rare disease patient advocacy groups. Ther Adv Rare Dis. 2023 Apr 24;4:26330040231164425. doi: 10.1177/26330040231164425. PMID: 37197559; PMCID: PMC10184204.

Van de Vlekkert, D., Hu, H., Fremuth, L. E., Brown, S. A., Weesner, J. A., Gomero, E., Campos, Y., & d’Azzo, A. (2023). AAV-mediated gene therapy for Sialidosis. bioRxiv, 2023.11.10.566667. https://doi.org/10.1101/2023.11.10.566667

Sources on Silaidosis

CURE SIALIDOSIS WEBSITE: curesialidosis.org 

Join the patient registry: curemucolipidosis.org/join-the-registry

Learn more about gene therapy in Sialidosis: https://www.massachusetts.edu/news/bridge-grants-support-research-rare-sialidosis-disease-and-patch-prevent-pressure-ulcers

Caciotti A, Melani F, Tonin R, Cellai L, Catarzi S, Procopio E, Chilleri C, Mavridou I, Michelakakis H, Fioravanti A, d’Azzo A, Guerrini R, Morrone A. Type I sialidosis, a normosomatic lysosomal disease, in the differential diagnosis of late-onset ataxia and myoclonus: An overview. Mol Genet Metab. 2020 Feb;129(2):47-58. doi: 10.1016/j.ymgme.2019.09.005. Epub 2019 Oct 31. PMID: 31711734.

Hwu, WL., Chang, K., Liu, YH. et al. Gene therapy corrects the neurological deficits of mice with sialidosis. Gene Ther 31, 263–272 (2024). https://doi.org/10.1038/s41434-024-00443-3

Lv RJ, Li TR, Zhang YD, Shao XQ, Wang Q, Jin LR. Clinical and genetic characteristics of type I sialidosis patients in mainland China. Ann Clin Transl Neurol. 2020 Jun;7(6):911-923. Doi: 10.1002/acn3.51058. Epub 2020 May 29. PMID: 32472645; PMCID: PMC7318099.

Zhang C, Liao Z, Zhou Y, Su X. Sialidosis type 1 without cherry-red spots: a case report and literature review. BMJ Neurol Open. 2024 Feb 14;6(1):e000498. doi: 10.1136/bmjno-2023-000498. PMID: 38361966; PMCID: PMC10868285.

Peng ML, Chau SF, Chien JY, Woon PY, Chen YC, Cheang WM, Tsai HY, Huang SP. Genetic Insights and Clinical Implications of NEU1 Mutations in Sialidosis. Genes (Basel). 2025 Jan 25;16(2):151. Doi: 10.3390/genes16020151. PMID: 40004480; PMCID: PMC11855786.

Platt FM, d’Azzo A, Davidson BL, Neufeld EF, Tifft CJ. Lysosomal storage diseases. Nat Rev Dis Primers. 2018 Oct 1;4(1):27. doi: 10.1038/s41572-018-0025-4. Erratum in: Nat Rev Dis Primers. 2018 Oct 18;4(1):36. doi: 10.1038/s41572-018-0037-0. Erratum in: Nat Rev Dis Primers. 2019 May 17;5(1):34. Doi: 10.1038/s41572-019-0089-9. PMID: 30275469.

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Gods and Genes is hosted and produced by Amber Sher, MS, CGC. Our logo graphic designer is Safiah Peeran. 

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