ION283 Safety Study

Fund treatment for Lafora disease!

Organized by Chelsea's Hope Lafora Children Research Fund

$64,124

62 Supporters

52% of $123,000 goal

Rare Disease Day Match

Donate today and double your impact! The team at Chelsea's Hope is matching gifts for Rare Disease Day.

$1,000 match complete!

Niki Markou

Fundraiser since Feb 2025

Share Niki Markou's Page

$8,635

6 supporters

431% of $2,000 goal

Niki Markou's Story

My dedication to funding treatments comes from my personal experience as a mother of a child with Lafora disease. My daughter Angelina is now 20 and has been suffering with symptoms for 6 years. Lafora is quick to manifest and progress; we lose our children too fast. Please help us continue to #fightlafora by giving children like Angelina access to this safety study and helping them find a cure.

Here is a video update from me about Ange

#PayItForward today! #laforadisease #refractoryepilepsy #epilepsyawareness #glycogenstoragedisease #childhooddementia #raredisease #terminalillness #findacure #fundacure

Team Leaderboard

Chelsea's Hope Board of Directors

4 members

$59,918

raised of $0 goal

Community

2 members

$2,910

Chelsea's Hope Staff & Volunteers

4 members

Team Members

Katrina Cotton

$51,283

16 Supporters

Niki Markou

$8,635

6 Supporters

Meredith

0 Supporters

Roderick

0 Supporters

Story

$64,124

62 Supporters

52% of $123,000 goal

Campaign Update

6 days ago

Two thirds of the way there! | Fully fund the Lafora safety study!

ONE MILLION + RAISED

We are SO CLOSE to funding the seventh patient in the safety study!

The Lafora community has crossed the one million dollar mark in support of the ION283 safety study today.

And your contributions are changing lives! There are six patients currently enrolled. Four have received a dose of ION283 and one patient has been treated twice.

We want to celebrate our accomplishments, but we can't stop now! We have to enroll the remaining four patients.

Thank you all for your continued support and generosity. Together, we fight Lafora.

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$20

Ermira Hyseni made a $20 donation

1 day ago

$6.05k

Niki Markou received a $6,050 donation from Historic Performance, Eco Perfromance Tuning, Fresh Finish, KP Performance in honor of Angelina Lati

6 days ago

We all got together in honor of Angelina Lati to raise money for the safety study to find a treatment/cure for Lafora disease. 4 small businesses hosted by Ange's Uncle Kypros Markou. Historic Performance, Eco Perfromance Tuning, Fresh Finish and KP Performance.

Anonymous and 3 others

Christine Thank you so much!

6 days ago

$10k

Katrina Cotton received a $10,000 donation from David and Lori Browne

7 days ago