News & Blog

MEET THE TEAM

Five Interns to Join Chelsea’s Hope

Chelsea’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:

  1. Science communications – to help families affected by Lafora Disease better understand the latest research, create educational resources, and expand the website’s science sections.
  2. Research network development – to develop a database of current tools and resources for the Lafora scientific community to promote research collaboration.
  3. Caregiver registry – to develop a registry of Lafora caregivers and create the first questionnaire to support families better.

Meet the Team

Text says 'MEET THE TEAM' on top of a photo of Maysoon Hussain, Celine Lozach, Tomás Quintero, Emilie Heller, and Mariah Merriam

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.

 

I SUPPORT RARE DISEASE DAY 29 FEB 2024 #RAREDISEASEDAY RAREDISEASEDAY.ORG

Rare Disease Day 2024 Press Release

SHINING 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.

“There is nothing in pharmacies…There is no clean place here… Everything is bad… Anyone who can help us and follow Zaina’s topic, please,” shared Doaa.

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.

Headshot of Camilla Bozzi

Volunteer Spotlight: Camilla Translated Six Lafora Disease Resources from English to Italian

Headshot of Camilla BozziChelsea’s Hope is grateful to announce that volunteer Camilla Bozzi has translated six Lafora Disease resources from English to Italian. The documents will help families access support, educational resources about Lafora, and updates on research.

We had the pleasure of meeting Camilla at the 2023 Lafora Disease Science Symposium in Bologna. She applied to volunteer after learning about the experiences of Lafora families and wanting to help in any way possible. A skilled Italian translator, she’s worked diligently on these six Lafora Disease resources:

Camilla shared, “If I am able to help even one person, one family, connect with the wonderful community behind Chelsea’s Hope, I know I did a good job!”

The team at Chelsea’s Hope is very grateful for the translation assistance. While our site uses Google Translate, we recognize our PDFs and other educational resources are difficult to access for the entire Lafora community. The organization remains committed to translating more of our resources in the future.

Support translation efforts

We are accepting applications for volunteers to translate the same and future documents from English to other languages. Not interested in volunteering? You can still help by sharing about our cause with your networks.

This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2024 Candid.'

Chelsea’s Hope Earns 2024 Platinum Seal of Transparency

This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2024 Candid.'Chelsea’s Hope is thrilled to announce we’ve just earned a Platinum Seal of Transparency from Candid for 2024!

We are excited to share the work our nonprofit does through our Candid nonprofit profile, and we invite you to view it and keep up to date with our impact. We shared information about our mission, programs, results, financials, and operations.

Chelsea’s Hope wants to ensure you have the progress updates you need to support our work with trust and confidence. Your contributions make our work to reach a cure for Lafora Disease possible. When you donate, know we continue to operate with the highest level of transparency. Our Platinum Seal is a testament to our commitment to our donors and community.

What’s next? 

In 2024, we plan to host two more Research Roundtables and the Lafora Disease Science Symposium. We will also coordinate discussion and fund a consensus document for biomarkers and treatment of Lafora Disease. As always, we will support the amazing Lafora researchers and industry partners as they do the incredible work of developing treatments for our children.

Thank you for supporting our mission of improving the lives of those affected by Lafora Disease and helping accelerate the development of treatments.