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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.

 

Lafora Disease Sibling Support Group with Mariah Merriam

Interested in a Sibling Support Group?

Chelsea’s Hope is delighted to announce the relaunch of our sibling support group, led by Mariah Merriam, to build community between siblings of those with Lafora Disease.

Are you the sibling of someone with Lafora Disease? We encourage you to fill out the interest form and download this flyer with all the details about what to expect from the program.

Image of the Lafora Disease Sibling Support Group Flyer

Mariah founded the group with the intention of providing emotional support and resources for siblings of Lafora Disease patients. She wrote:

“As the sister of two Lafora Disease patients, I understand how isolating grieving a sibling can be. That’s why I founded the sibling support group with Chelsea’s Hope! I hope you will join us in this journey to support one another in our unique experience as siblings.”

Are you interested?

We need to know how many people to expect in the group as we plan. The first step is to please fill out the interest form. Mariah will contact you and add you to a group chat. Next, you can meet her in a low-stress, informal environment before deciding if you’d like to join the Zoom meeting with others. The primary language for the group sessions will be English, but everyone is welcome! We will have a chat with translation capabilities and will do everything we can so language is not a barrier to participation. Also, you can email Mariah with any questions about the group.

Watch a video explaining the Sibling Support Group.

Please note: The program is only for Lafora Disease siblings. You must be age 13+. Parents are welcome to fill out the interest form on behalf of their children.


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