The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora Disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. EIN: 27-1008382
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
Reflecting on Progress: Explore Our Impact in the Chelsea’s Hope 2023 Annual Report
/by Christine KellySince our humble beginnings as a blog started by Chelsea Gerber’s family in 2007, Chelsea’s Hope has remained committed to sharing Lafora stories and connecting families. In 2009, we became a 501c(3) organization to raise funds for research, treatment, and, ultimately, a cure for those affected by Lafora Disease. There are now promising treatments in the pipeline, all thanks to the dedication of the Lafora research network. In 2023, we updated our mission statement to reflect the challenges we seek to overcome.
2023 Achievements
Despite its challenges, last year included hopeful advancements. Learn more about our events, programs, and milestones in the 2023 Impact section of the Report.
In 2023, we…
Much of our work was possible thanks to the capacity-building grants from the Chan Zuckerberg Initiative. We also received support from the Danny Did Foundation, Vibe Bio, the Every Life Foundation, and generous donations from the Weiss family. We appreciate all our 2023 donors! Your contributions will support our work in 2024.
2024 Goals
However, 2023, like every year before, also left us mourning the passing of more children. We need to stop this.
Our goals for 2024 are to:
What’s next?
Are you interested in being part of the next chapter of our mission? There are many ways to get involved! One way to stay connected is to sign up for our mailing list, which includes job and board postings and research updates. You can also follow our social media for regular updates. Finally, we always welcome donations and volunteers to support our cause.
We remain committed to reaching a cure for Lafora this year and beyond. Thank you for your partnership!
Chelsea’s Hope supports Purple Day 2024
/by Christine KellyApproximately 50 million people live with epilepsy globally, including Lafora Disease warriors. An extremely rare epilepsy, Lafora is complex and has limited treatment options. Symptoms of the disease, also known as Lafora progressive myoclonus epilepsy, include increasingly recurrent, intractable seizures and myoclonus.
Chelsea’s Hope remains committed to improving the lives of those affected by Lafora Disease. Accordingly, the organization has shared social media advocacy tools to raise awareness about the unique challenges of Lafora, as well as links to other organizations and support that families could benefit from on our Resources page.
If you join in sharing on social media, then here are some caption ideas:
💁♀️ Share about who you wear purple for.
💬 Explain some facts, like how Lafora Disease is often misdiagnosed as Juvenile Myoclonic Epilepsy.
🧠 Describe symptoms of Lafora, like recurrent seizures.
Purple Day is an opportunity for education and empathy for all affected by epilepsy, including Lafora patients and their loved ones. Together, we can work towards a future where epilepsy is better understood and all individuals receive the support and care they deserve. Together, we fight Lafora.
Five Interns to Join Chelsea’s Hope
/by Christine KellyChelsea’s Hope is delighted to announce we are expanding the team by hiring five interns through March and April. While the organization initially posted three opportunities, there were so many impressive candidates that the Board of Directors approved five internships.
Chelsea’s Hope is expanding its capabilities to meet our goals and strategy by hiring interns to work in these areas:
Meet the Team
Science Communications
Maysoon Hussain recently graduated from Ross University School of Medicine and is applying for her residency in Obstetrics and Gynecology. She became interested in the rare disease space through her mother’s work and her time as a research intern at UT Southwestern. She will start as a Science Communications Intern in March.
Celine Lozach is majoring in Economics and Environmental Science at Baruch College. She has research communication experience as a Yale Conservation Scholar and previously worked at Make-A-Wish. She will start as a Science Communications Intern in March.
Tomás Quintero is a recent graduate from Davidson College with a passion for neuroscience and medical research. He is a Fulbright Scholar in Colombia and is committed to making science accessible and engaging for everyone. He will start as a Science Communications Intern in April.
Research Network Development
Emilie Heller is majoring in Chemistry at the University of Washington in Seattle. She looks forward to working with Lafora Research Labs to enhance collaboration and facilitate open science. She will start as the Research Network Development Intern in March.
Caregiver Registry
Mariah Merriam is a longtime volunteer and patient advocate with Chelsea’s Hope. She has two siblings with Lafora Disease and is passionate about reaching a cure and any work to improve the lives of those affected. Mariah is a Research Assistant in Dr. Berge Minassian’s Lafora Disease lab at UT Southwestern Medical Center, and she will start medical school at Western University in Oregon this fall. She will start as the Caregiver Registry Intern in March.
Building a Brighter Future
The internship opportunities closely align with the interns’ career aspirations and personal goals. They will work 10 hours a week under the management of Science Director Dr. Kit Donohue.
Chelsea’s Hope welcomes Maysoon, Celine, Tomás, Emilie, and Mariah. Their passion and commitment to our cause gives us hope for a brighter future, especially in the face of recent challenges in securing treatments for our children. Together, we remain steadfast in our mission to improve the lives of those affected by Lafora Disease.
Rare Disease Day 2024 Press Release
/by Christine KellySHINING A LIGHT ON LAFORA DISEASE IN GAZA, GLOBALLY
Chelsea’s Hope will raise awareness about Lafora on Rare Disease Day 2024.
SACRAMENTO, Calif. – February 28, 2024 – Chelsea’s Hope Lafora Children Research Fund, a 501(c)(3) nonprofit organization, joins the global rare disease community to advocate for patients like 17-year-old Zaina in Gaza and raise awareness about Lafora on the rarest day of the year – February 29, 2024.
Lafora Disease is a neurodegenerative condition affecting an estimated 200 children worldwide. It is a genetic condition in which patients cannot maintain a normal glycogen concentration, resulting in a toxic accumulation of glycogen, or Lafora Bodies, in the heart, spine, and brain. Symptoms include ataxia, childhood dementia, cognitive decline, and difficulty speaking, walking, and eating.
Zaina was diagnosed with the ultra-rare epilepsy at the age of 13. A stellar student, Zaina applied herself to physical, occupational, and speech therapy just as she had in school. She relied on medication to manage her seizures and lost the ability to speak and move because of her Lafora symptoms.
Currently, Zaina is surrounded by violence and destruction in Gaza. The hospital where she received treatment is no longer operable, and her family has evacuated their home and moved across Gaza several times to escape the fighting. Chelsea’s Hope has remained in contact with her mother, Doaa, since October 8. The worldwide Lafora community has shared their story and supports the family however we can.
While Zaina’s Lafora story is similar to other children, she is experiencing extraordinary conditions compared to other patients. This Rare Disease Day, join us in raising awareness. Donate to this GoFundMe to help her family evacuate Gaza.