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
Now Recruiting: ION283 Safety Study
/by Christine KellyThe application packet for the ION283 safety study is now available!
You can view the application as a PDF or download a Word document.
Please read the email below from Dr. Minassian:
“Dear Lafora disease patients and families,
We are now ready to receive referrals for consideration for inclusion into the clinical trial: Safety and Efficacy of Intrathecally Administered ION283 in Patients with Lafora Disease
This email relates to the prescreening phase. Below are the requirements for the prescreening. If a patient passes the prescreening, they will be placed on a list of prospective patients to participate in the trial. Each patient invited to participate will still need to meet broader inclusion-exclusion criteria at the time of screening in Dallas. These final inclusion-exclusion criteria are listed in the above website.
Only referrals from neurologists will be accepted, except where it is impossible for the patient to have a neurologist (we are thinking of the patient in Gaza), in which case another doctor or local medic can make the referral.
Attached is a document that contains a prescreening table and the Lafora Disease Performance Scale, both of which should be completed by the referring neurologist. All parts of the document must be completed. All documents and video mentioned in the prescreening table must be provided at the time of referral precisely as described.
Referrals must be sent by the neurologist from his or her email address to LDrecruiting@utsouthwestern.
The list of prospective participants will be generated on a first-come first-served basis, where first-come means that all the above requirements are included in the referral. Any referral that has any component missing will not be accepted and will be returned.
The study will only include 10 participants. Therefore, the first 10 on the first-come list will be invited to Dallas for formal screening toward potentially entering the study. If any patient among the first 10 fails to meet inclusion-exclusion criteria at the time of final screening in Dallas, then this will open a slot for a subsequent patient on the list.
The upper age limit is 18. We understand this to mean any patient before their 19th birthday at the time of final screening in Dallas. In case among the first 10 patients passing prescreening there is a patient whose turn in the list means they will age out of their 19th birthday at the time of the final screen in Dallas, such a patient may be moved up the list as long as this does not affect the age-criterion admissibility of the remaining patients.
Thank you for considering participation in this clinical trial.
Berge A. Minassian, MD
Our deepest gratitude goes to Dr. Minassian, Dr. Joshi, Dr. Verma, Dr. Messahel, and the entire team at UTSW for making this possible. We are also thankful for Ionis’ drug donation and our community’s collective fundraising efforts. We can’t stop now!
Please help us share this information, and good luck to everyone applying.
Apply to Join the Board of Directors!
/by Christine KellyApply to join our Board of Directors for the 2025-2026 term!
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:
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?
Announcing Holiday Season Auction
/by Christine KellyThis 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
Chelsea’s Hope Announces Launch of Advisory Board
/by Christine KellyAs 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.
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.