• Link to X
  • Link to Facebook
  • Link to Instagram
  • Link to LinkedIn
  • Link to Youtube
  • Donate to fight Lafora disease!
  • Contact Us
info@chelseashope.org
Chelsea's Hope Lafora Children Research Fund
  • What is Lafora Disease?
    • About Lafora Disease
    • ICD-10 Codes for Lafora Disease
    • Lafora Disease Symptom Checker
    • Lafora Disease Therapy
    • Lafora Disease Clinical Pipeline Progress
    • ION283 Safety Study
    • Family Stories
  • About Us
    • Chelsea’s Story
    • Leadership Team
    • Advisory Board
    • Contact
  • News
  • Resources
    • For Families & Caregivers
      • Newly Diagnosed
      • Tips for Lafora Disease Families
      • Bereavement Support
      • G-Tube Tips – A Mother’s Perspective
      • Lafora Clinical Network Registry
      • Refer Your Clinician to the Registry
    • For Researchers
      • Lafora Mutations Database
      • Lafora Canine Registry and Database
      • Apply to Join the Clinical Registry
  • Events
    • 2026 Lafora Science Symposium
    • Courage in Care: Lafora Caregiver Series
    • Lafora Disease Roundtables
  • Get Involved
    • Ways to Give
    • Volunteer
    • Join Canine Registry
  • Click to open the search input field Click to open the search input field Search
  • Menu Menu

Tag Archive for: research

A graphic with nine headshots introducing new team members; text says: Meet the team sophie stein research support intern jeremiah paul fundraising support intern samy sharif science communications intern sara gerber research support intern sally leung research support intern jhanavi kotian science communications intern kait fedor development fellow vaishali jain fundraising support intern anna gould science communications intern

New Team Members Join Chelsea’s Hope for the Summer

June 24, 2025/by Chelsea's Hope

We are thrilled to introduce nine new team members who will be joining us this summer. Chelsea’s Hope was amazed when we had more than 500 applications for our 2025 internship program. As the organization seeks to expand its capabilities to achieve our mission, we have brought on as many team members as possible to work on a variety of projects and provide community assistance. This work is possible thanks to the Chan Zuckerberg Initiative and individual sponsors. 

Research Support Interns

Sophie Stein Sophie Stein is a rising senior at Cornell University pursuing a degree in Human Development. She has a special interest in medical research.

Sara GerberSara Gerber is a genetic counseling graduate student at Stanford University. She is passionate about rare disease research and advocacy, bioethics, and public health. 

Sally LeungSally Leung graduated from UC Irvine with a B.A. in Public Health Policy. She is excited to start a Master’s in Public Health program and is interested in exploring how healthcare inequities affect chronic and infectious diseases in medically underserved communities

Fundraising Support Interns

Jeremiah PaulJeremiah Paul is a rising senior at the University of Miami, studying Business and Computer Science. Diagnosed with a chronic illness at a young age, he understands the challenges faced by the Lafora community and wants to use his skills to support our cause.

Vaishali JainVaishali Jain is a rising junior at UC San Diego majoring in Molecular and Cellular Biology and Global Health. She is passionate about health equity, community outreach, and advocacy.

Science Communications Interns

Samy SharifSamy Sharif is starting medical school in the fall and is eager to help with Lafora advocacy efforts. He wants to make a lasting impact by creating accessible resources and sharing powerful stories. 

Jhanavi KotianJhanavi Kotian is a senior at San Jose State University, majoring in Biological Sciences. She is eager to bridge the gap between families and the scientific community through effective, compassionate communication.

Anna GouldAnna Gould is a rare disease advocate who graduated from Washington University with a degree in Biology in 2024. She shares about her journey with Marfan Syndrome on her blog and is eager to bring her skills to help the Lafora community.

Organization Development Fellow

Kait FedorKait Fedor has a passion for nonprofit development and a drive to raise funds and support for the Lafora disease community. She earned her MS in Nonprofit Management and Philanthropy from Bay Path University in 2024. 

New Team Members Committed to the Mission

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

 

https://chelseashope.org/wp-content/uploads/2025/06/Meet-the-Team-Summer-2025.png 600 1200 Chelsea's Hope https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Chelsea's Hope2025-06-24 13:25:172025-06-24 13:41:18New Team Members Join Chelsea’s Hope for the Summer

June Research Roundtable Registration

May 22, 2023/by Christine Kelly
June Lafora Disease Research Roundtable image of a pink background with a pinned piece of paper. It has a logo reading: Chelsea's Hope Lafora Children Research Fund Research Roundtable Next lines of text: Thursday, 22 June 10:30 am - 12 pm EST Button text reading: Register to attend via ZoomPlease join us for our June Research Roundtable! Registration is now open.

When?
It will be Thursday, June 22, 2023, from 10:30 am – 12:00 pm EST.

Where? The Roundtable will be virtual. You can register to attend via Zoom! 

We will be hearing from experts on clinical markers in Lafora Disease. Like the April Roundtable, there will be presentations and ideally time for discussion at the end.

Families are welcome to attend and ask questions, so we hope you will be able to join us for this event! We recommend that you refer to Science Terms 101 if you are not a researcher or clinician attending. It’s full of helpful definitions of scientific terms you might hear. You can download the PDF and print it out for your reference!

The Roundtable is only one month away, so register today!

Also, please register if you are interested but you are unsure if you can attend or not! We will email a summary of the Roundtable to everyone who registered. It will also be posted on our Research Roundtable page.

Chelsea’s Hope is excited about our June Research Roundtable. Please contact us if you have any questions.

Register for the Research Roundtable
https://chelseashope.org/wp-content/uploads/2023/05/Research-Roundtable-Announcement-06.22-1.png 1620 1620 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-05-22 16:00:142023-06-22 15:25:53June Research Roundtable Registration
Chelsea's Hope Lafora Children Research Fund Research Roundtable Thursday, April 27th, 10:30 am - 12:00 pm EST. Register to attend via Zoom We'll hear from Lafora Disease and Adult Polyglucosan Body Disease researchers around a common goal: reducing glycogen aggregation in the brain.

First Lafora Disease Research Roundtable

April 20, 2023/by Christine Kelly

A square image announcement for the Lafora Disease Research Roundtable. The top half of the image reads: Chelsea's Hope Lafora Children Research Fund Research Roundtable The bottom half contains the event details: Thursday, April 27th, 10:30 am - 12:00 pm EST. Register to attend via Zoom We'll hear from Lafora Disease and Adult Polyglucosan Body Disease researchers around a common goal: reducing glycogen aggregation in the brain. Please join us for our first Lafora Disease Research Roundtable!

When? It will be Thursday, April 27th, 10:30 am – 12:00 pm EST.

Where? The Roundtable will be virtual. You can register to attend via Zoom!

We’ll bring together Lafora Disease and Adult Polyglucosan Body Disease researchers around a common goal: reducing glycogen aggregation in the brain. The Research Roundtable will feature several presentations, followed by time for group discussion.

The presentations will be geared toward the science community as we work to build allies toward developing treatments for Lafora disease, but everyone is welcome. Families are welcome to attend and ask questions, so we hope you will be able to join us for this event!

It’s only one week away, so register today for the Lafora Disease Research Roundtable!

Also, please register if you are interested but you are unsure if you can attend or not! We hope to send the Zoom recording of the roundtable to everyone who signed up. However, we will not make the recording available publicly.

Chelsea’s Hope is excited for our first Research Roundtable. If successful, we plan to continue the series in the future. Please contact us before the roundtable if you have any questions.

Register for the Research Roundtable
https://chelseashope.org/wp-content/uploads/2023/04/Research-Roundtable-Announcement-04.18.png 1620 1620 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-04-20 08:51:382023-06-22 15:23:21First Lafora Disease Research Roundtable

About Chelsea’s Hope

Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s story with family and friends. A 501(c)(3) organization since 2009, we have made an impact by raising awareness, connecting families worldwide, funding research, and maintaining hope.

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. [Read More]

View Chelsea’s Hope Newsletter Archive 

Donate to Lafora Research

Latest News

  • Press Release: United Against Lafora, Families Worldwide Raise Awareness

  • New Resource: Lafora Anti-Seizure Medication Guidelines

  • Join in Lafora Body Disease Day 2026!

  • Lafora Therapy Q&A Resources

  • Student Ambassador Applications Open

  • Social Security Added Lafora to Compassionate Allowances List

  • Elpida Therapeutics’ Press Release

  • ION283 to be Developed by Elpida Therapeutics

  • Update on the ION283 Program from Telethon

  • Introducing the Lafora Clinical Network Registry

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 nonprofit organization. EIN: 27-1008382

Location imageChelsea’s Hope c/o Dr. Donohue

976 Maywick Dr.

Lexington, KY 40504

info@chelseashope.org

Use ICD-10 code G40.C for Lafora.

    • Follow us on
    • Facebook
    • Instagram
    • Twitter
    • LinkedIn
    • YouTube
    • TikTok
ION283 Safety Study
Copyright © 2017-2026 Chelsea's Hope Lafora Children Research Fund. All Rights Reserved.
  • Home
  • News
  • About Lafora Disease
  • Donate
  • Contact
  • Privacy Policy – Other Policies
Scroll to top Scroll to top Scroll to top