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
Chelsea’s Hope c/o Dr. Donohue
976 Maywick Dr.
Lexington, KY 40504
Use ICD-10 code G40.C for Lafora.
Social Security Added Lafora to Compassionate Allowances List
/by Chelsea's HopeBig news for the Lafora community in the United States! The Social Security Administration (SSA) added Lafora disease to its Compassionate Allowances List. U.S. Lafora patients can qualify for disability benefits faster through the Compassionate Allowances List. In fact, SSA says your application would be “moved to the front of the line.” The SSA reported that […]
Elpida Therapeutics’ Press Release
/by Chelsea's HopeElpida Therapeutics released a press release about acquiring ION283 and advancing this potential therapy. We are fortunate that Terry shared a letter with us earlier in the week. For more information about the nonprofit biotech company and the license transfer from Ionis, you can read the press release that Elpida Therapeutics sent out here. Please […]
ION283 to be Developed by Elpida Therapeutics
/by Chelsea's HopeExciting news for the Lafora community! Ionis reached an agreement for the future of the ION283 asset with Elpida Therapeutics. Terry Pirovolakis, CEO of Elpida Therapeutics, asked us to share this letter with the Lafora community to introduce their company and their plans for ION283. You can read the letter here: Chelsea’s Hope is committed […]
Update on the ION283 Program from Telethon
/by Chelsea's HopeBelow is an update from Fondazione Telethon, which shares that Ionis transferred development rights to another organization and reaffirms Telethon’s commitment to the Lafora community. Dear Members of the International Lafora Patient Community, Following our previous communications, we would like to provide an important update regarding the ION283 program. We have been informed that Ionis […]