Five members of the Chelsea's Hope Board of Directors smiling and standing together.

Apply to Join the Board of Directors!

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Apply to join our Board of Directors for the 2025-2026 term!

Five members of the Chelsea's Hope Board of Directors smiling and standing together.

Chelsea’s Hope Board members at Symposium 2024.

The Board of Directors includes 5-9 individuals who meet monthly to review, plan, and distribute resources to further the organization’s mission. The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. The organization’s leadership team is fully remote, with some conference travel. Members of the Board of Directors may serve up to two consecutive terms in their respective positions. Each term is two years long and starts in January on odd-numbered years (i.e. the next term begins January 2025).

Members of the Board of Directors are expected to:

  • Attend the monthly board meetings (of which four are mandatory)
  • Serve on at least one committee for the organization
  • Be willing to assist with special events at the organization, including but not limited to our Annual Symposium, Family Q&A Sessions, conference presentations, and fundraising events.

The Board of Directors comprises a President, Vice President, Secretary, Treasurer, and up to five At-Large Members. At-Large Members must fulfill the requirements described above.

Finally, you can find more details about the responsibilities and duties of the Board of Directors HERE.

Application requirements

Apply to join the Board by Friday, November 29th. The organization will contact applicants in December with more information. Please fill out our Google Form and include your CV or resumé.

Are you interested?

Yes, I’m interested!
BECAUSE WE HAVE HOPE Lafora Holiday Season Auction 2024

Announcing Holiday Season Auction

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This November, we are hosting a holiday season auction to raise money for the upcoming ION283 safety study.

Bidding will open on November 1st and continue through the 30th. 100% of the profits will go toward the safety study.

Each piece has been donated by the Lafora families or affiliates. Check out our page to see what items are already available for bidding. We invite you to bid on an item to purchase or share this auction with your family and friends via this link: https://givebutter.com/c/laforaauction/auction.

How it will work

Some items will have a unique bidding timeline, but the entire online auction will run throughout November. Generous supporters have donated the items from around the world!

You will have to register to bid here: https://givebutter.com/c/laforaauction/auction.

Please review the details and shipping for each item you bid on. Some items have additional shipping costs, while others only ship to certain countries.

Can you help us?

This is an open call for in-kind donations for our holiday season auction! We request artwork, books, clothing, jewelry, tickets, vacations, and passes to events in your country.

Please email us with the subject “November Auction Donation” to get involved. You can donate items until November 24th.

Items available

Custom made Cruella costume
Tuscan Treasures Vacation
Passport to Paradise Vacation
Mexican Moments Vacation
Handmade gifts from Cel-Luz
Pride and Prejudice
Broad Museum Tickets
Painting by Niki
Painting by Angelina

Chelsea’s Hope Announces Launch of Advisory Board

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As announced during our 15-year celebratory dinner, Chelsea’s Hope is pleased to share the launch of our Advisory Board.

Chelsea’s Hope has a dedicated Board of Directors, staff, and volunteers who work to execute our mission. To accelerate our path to treatment and expand our capacity to serve families with Lafora, the Board nominated 11 champions in the fields of basic science research, clinical care, and regulatory expertise to provide advice and guidance as we work toward the common goal of a cure for Lafora. We are pleased to share that all 11 nominees have agreed to serve as members of the Advisory Board.

Chelsea's Hope Advisory Board standing in front of a screen

The first Chelsea’s Hope Advisory Board meeting was on September 25th, 2024.

Please join us in celebrating our inaugural Advisory Board: Dr. Pascual Sanz (Valencia Institute of Biomedicine, CSIC), Dr. Souad Messahel (Elpida Therapeutics), Dr. Jose Serratosa (Fundacion Jimenez Diaz University Hospital), Dr. Jordi Duran (IQS Barcelona – Universitat Ramon Llull), Dr. Roberto Michelucci (IRCCS Istituto delle Scienze Neurologiche di Bologna), Dr. Francesca Bisulli (University of Bologna), Dr. Matthew Gentry (University of Florida), Dr. Antonio Delgado-Escueta (David Geffen School of Medicine at UCLA), Dr. Viet Nguyen (Chapman University), Dr. Berge Minassian (UT Southwestern Medical Center), and Mr. Jeff Milton (La Jolla Labs).

The Advisory Board will meet twice yearly and offer guidance and support to the Chelsea’s Hope Board of Directors. We appreciate their advice on our programs, fundraising, and events. 

The inaugural Advisory Board meeting was held on September 25th after our 2024 Symposium. We look forward to these experts’ impact as they work more closely with our organization and advance our mission.

Q&A Session about Family Support for the Safety Study with Dr. Souad Messahel

Announcing a Q&A Session about Family Support for the Safety Study

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We are excited to announce a Q&A Session on Zoom about family support for the Safety Study this coming Monday, October 14th, at 10 am ET. Dr. Souad Messahel will join us to answer families’ questions about visas, travel insurance, health insurance, and accommodations for patients accepted into the safety study.

During the meeting, Dr. Messahel will present all the support materials she has for families and answer our questions. Add the event to your Google Calendar, Outlook Calendar, or Yahoo Calendar. Please find the Zoom invite below.

Please email your questions beforehand to Dr. Kit Donohue with the subject line “Safety Study Q&A Question.”

Can’t make it? No worries! We will record the event and share it with families. Also, after the Q&A, Chelsea’s Hope will update our Safety Study FAQs page with everything we’ve learned.

Chelsea’s Hope is inviting you to a scheduled Zoom meeting.

Topic: Q&A Session about Family Support for the Safety Study

Time: Oct 14, 2024 10:00 AM Eastern Time (US and Canada)

Join Zoom Meeting: https://us06web.zoom.us/j/81449041564?pwd=N4umHP5bsNVUO67WrwasK8EbSpncI9.1

Meeting ID: 814 4904 1564

Passcode: 847627

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