Introducing the Lafora Clinical Network Registry
Chelsea’s Hope is proud to announce the launch of the Clinical Network Registry, a centralized resource connecting patients and families to trusted providers dedicated to Lafora disease care.
We are excited to announce the launch of the Chelsea’s Hope Clinical Network Registry, a new initiative as part of our Centers of Excellence project, dedicated to connecting patients and families with trusted providers who have experience or interest in treating Lafora disease.
The goal of this registry is to identify clinicians who are committed to advancing the diagnosis, treatment, and holistic management of Lafora disease through coordinated care, patient advocacy, and collaborative expertise. The Lafora Clinical Network will serve as a trusted, centralized resource connecting patients and families to providers with experience or dedicated interest in Lafora disease, ensuring access to knowledgeable, high-quality care.
We invite clinicians to join our network by completing the Clinician Application, where you can share your experience, areas of expertise, and how you would like to connect with patients and families. We also welcome referrals from patients, families, and fellow clinicians through our Referral Form, helping us identify providers who deserve a place in this growing network.
As we build this registry together, we hope to invite the community to help review and shape our standards of care, ensuring this network reflects the needs and experiences of those it supports.
Questions?
Whether you are a clinician ready to join or a family who knows a provider who should be part of this network, we would love to hear from you. Reach out to us at info@chelseashope.org. Thank you for your support of Chelsea’s Hope and your commitment to advancing care for Lafora patients.
Amrita Pannu graduated from the University of California, Berkeley, with a BA in Immunology and a minor in Health and Wellness in May of 2024. She is deeply passionate about community work and is excited to raise awareness for Lafora patients and their families with her work on the Caregiver Support Survey. In addition, she is excited to use her experience in patient advocacy to educate families about Lafora’s ICD-10 code and its significance for not only patients in the healthcare system, but also as a path towards a cure.
Arianna Ruiz is a student at the University of Maryland, College Park, majoring in Public Health Science on the pre-medicine track. Originally from Glen Burnie, Maryland, she is passionate about improving healthcare access and advancing health equity, particularly for individuals living with rare diseases. Her interest in rare disease advocacy and research stems from her own experience living with Type 1 diabetes, which has given her firsthand insight into the challenges patients face when navigating complex healthcare systems. Through her internship with Chelsea’s Hope, Arianna is excited to contribute to efforts that expand research collaboration, strengthen connections between clinicians and families, and make care and resources for individuals affected by Lafora disease more accessible and equitable. She hopes to pursue a career in medicine focused on improving patient outcomes and reducing barriers to care.
Kun Yan is a rising senior studying Biology at Boston University with interests in translational medicine, patient-centered care, and rare disease advocacy. Through her clinical volunteering experiences and nephrology research at Boston Medical Center, she has developed a strong passion for bridging scientific research with compassionate healthcare. Outside of academics, Kun enjoys writing, swimming, fitness, and community outreach. She is excited to support the Lafora community by contributing to patient advocacy, educational initiatives, and ongoing efforts to improve treatments and advance research toward a cure.
Sonia Woo is a rising sophomore studying Public Health and the Writing Seminars at Johns Hopkins University. She is passionate about rare disease advocacy, patient and family education, and health equity. Sonia is working on supporting the clinical network.
Soomin Kim is a rising junior at Johns Hopkins University studying Molecular and Cellular Biology and Psychology. She is passionate about the intersection of science and public health, and hopes to contribute through research and rare disease advocacy for underserved communities. Soomin aspires to learn more about bridging systemic gaps in healthcare access and accelerating treatments for rare disease patients through research.
Danika Smidt is a rising senior at the University of Colorado Boulder pursuing a BS in Molecular, Cellular, and Developmental Biology with minors in Biochemistry, Public Health, and Sociology. Outside of class, she is an active member of the Golden Buffalo Marching Band, serves as the VP of Finance for the Women’s Network, and is an ambassador for Morgan’s Message. Passionate about raising awareness on Lafora disease through social media, she is excited to start a new chapter and be a part of Chelsea’s Hope.
Deveny Gilmore is a third-year genetics major at the University of Georgia on a pre-genetic counselor track. She is passionate about helping families find answers and understand their medical diagnoses. Deveny is creating infographics and resources for caregiver support, assisting with the recently launched Courage in Care program.
Jeanine Abedelal is majoring in Communication Sciences and Disorders on a pre–Speech-Language Pathology and healthcare track at Northwestern University. She has a strong interest in pediatric care, neurodivergence, and rare disease advocacy. Jeanine was awarded a School of Communication Internship Grant through Northwestern University to support her work this summer. She is excited about the opportunity to contribute to Chelsea’s Hope and work toward advancing research and advocacy for Lafora disease.
Josie Milner is majoring in Public Health with a minor in Business Administration at the University of Washington in Seattle. She is passionate about health education, community outreach, and creating accessible resources that help improve public health awareness.
Qianna Dudsic studies molecular biology at the University of Washington. In her spare time, she enjoys reading, hiking, and listening to music. She is dedicated to making a meaningful impact in the Lafora community by bringing awareness to Lafora disease and raising support for the development of new treatments and a potential cure. She is excited to join Chelsea’s Hope and contribute to its mission.
Isabella Connolly is a rising senior at the University of Maryland, where she is pursuing a Bachelor of Science in Global Health. In her free time, Isabella enjoys reading and spending time at the beach. Her passion for public health has inspired her interest in learning more about rare diseases and advocacy efforts. Through her role at Chelsea’s Hope, she hopes to contribute to the Lafora community by supporting fundraising initiatives and raising awareness about the disease.
Sereen Musleh is studying health science as a Pre-PA student based in Chicago, Illinois. She has a strong interest in neurology and previously worked as a pharmacy technician. Sereen recently earned her phlebotomy certification and is passionate about patient care as well as healthcare education. In her free time, Sereen enjoys baking and spending time outdoors.
Adaku Iwudike is a Banneker Key Scholar studying Bioengineering at the University of Maryland, College Park. Adaku is passionate about advancing research for rare and chronic illnesses because she believes everyone deserves clarity about their health. Through this work, Adaku hopes to contribute to a future where technology advances our ability to understand disease earlier, provide clearer answers, and improve the lives of patients and families.
Anson Chau is a rising junior at UC Berkeley studying Integrative Biology and Public Health with a deep interest in chronic illnesses and education. He is excited to work with Chelsea’s Hope this summer to advocate for individuals and families affected by Lafora disease. Through this internship, Anson hopes to gain more hands-on research skills by contributing to the team and supporting our research roadmap project.
Elizabeth Wilding recently earned her Master of Public Health from the University of Virginia, where she focused on epidemiology, health data analysis, and public health research. Through her internship with Chelsea’s Hope, she looks forward to supporting the Lafora Research Network by contributing to research coordination, data analysis, and efforts to advance understanding of Lafora disease and improve outcomes for affected individuals and families.
Chelsea’s Hope c/o Dr. Donohue
