News & Blog

August 3, 2026 Letter from Terry Elpida Therapeutics

ION283 to be Developed by Elpida Therapeutics

Exciting news for the Lafora community! 

Ionis reached an agreement for the future of the ION283 asset with Elpida Therapeutics. Terry Pirovolakis, CEO of Elpida Therapeutics, asked us to share this letter with the Lafora community to introduce their company and their plans for ION283. You can read the letter here: 

Chelsea’s Hope is committed to advocating for the Lafora community and helping accelerate the development of this potential treatment. Please direct any questions about ION283, Elpida Therapeutics, or the Safety Study to ion283@chelseashope.org, and we will get back to you.

As a reminder, Chelsea’s Hope will host a Lafora Therapy Q&A on August 11 at 1:30 PM EDT. This session will go over new resources we’ve recently shared about the Lafora therapeutic pipeline. Then, we will answer your questions submitted in advance of the meeting, ending with some time for questions and responses. We will use TransPerfect AI translation for captions. Please register in advance here.

Update on the ION283 Program from Telethon

Below is an update from Fondazione Telethon, which shares that Ionis transferred development rights to another organization and reaffirms Telethon’s commitment to the Lafora community.

Dear Members of the International Lafora Patient Community,

Following our previous communications, we would like to provide an important update regarding the ION283 program.

We have been informed that Ionis has decided to transfer the development rights of ION283 to another organization, different from Fondazione Telethon. As this decision rests entirely with Ionis, it is not under our control, as we have consistently clarified in our previous updates.

From the outset, our only priority has been — and will remain — to ensure that people living with Lafora disease have a real opportunity for a therapeutic option: in this spirit, we have donated all the work and materials developed over the past months to the organization identified to continue the program, in order to facilitate the fastest possible progress.

We are fully aware of the sense of urgency experienced by families and of how deeply time matters in the context of this disease. For this reason, we believe that enabling continuity — regardless of the actors involved — is the most responsible choice in the best interest of patients.

At the same time, we wish to reiterate Fondazione Telethon’s close commitment to the Lafora community: we will continue to support scientific research through the avenues that can best safeguard all patients, in full respect of internationally recognized standards, regulatory requirements, and the principles of scientific rigor and excellence.

Please be assured that we have done — and will continue to do — everything within our reach to support the Lafora community.

We remain close to you and committed to sharing further updates as soon as reliable information becomes available.

With respect and commitment,

Alessandra Camerini

Head of Relations with Patients and Patient Organisations

Centers of Excellence Clinical Network Chelsea's Hope Lafora Children Research Fund

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.

For Clinicians: Apply to Join the Network For Families: Submit a Referral Right Right
Centers of Excellence Clinical Network Chelsea's Hope Lafora Children Research Fund

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.

2026 Summer Interns Amrita Arianna Kun Sonia Soomin Danika Deveny Jeanine Josie Qianna Isabella Sereen Adaku Anson Elizabeth Sara

Meet our 2026 Summer Interns!

We are thrilled to welcome 16 new interns this summer, supporting the mission through fundraising, creating resources, new webpages, and supporting research and clinical activities.

With backgrounds from pre-med tracks at their schools to studying public health, they are bringing us valuable assistance to drive many projects forward. Keep reading to meet the new team members!

Clinical Support Interns

Amrita PannuAmrita 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 RuizArianna 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 YanKun 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 WooSonia 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 KimSoomin 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.

Communications Interns

Danika Smidt​​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​​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 AbedelalJeanine 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 MilnerJosie 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​​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.

Fundraising Support Interns

Isabella Connolly​​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​​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.

Research Support Interns

Adaku IwudikeAdaku 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 ChauAnson 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 WildingElizabeth 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.

 

Sara Ghoddoussi

​Sara Ghoddoussi graduated with her Bachelor of Science in Neuroscience from Wayne State University, with dual minors in Economics and Public Health. In the fall, she will begin pursuing a Master of Public Health in Health Behavior and Health Equity, along with a certificate in Public Health Genetics, at the University of Michigan. Sara is passionate about genetics, rare disease advocacy, community engagement, and improving access to health education.

Interns United for our Mission

Our summer team members are committed to improving the lives of those affected by Lafora disease and helping accelerate the development of treatments. Please join us in welcoming everyone as they assist with projects this summer, and don’t hesitate to contact us if you have any questions.