Amber Meets the Queen!
A YEOVIL girl who defied expectations that she would never walk presented the Queen with a posy of flowers yesterday. Amber Partridge, seven, was born with a rare genetic disorder, known as CDKL5, which affects fewer than 200 people worldwide and saw her suffer up…Read More
Extra! Extra! IFCR has an ad in the USA Today!
IFCR is excited to announce that we will have an ad in USA Today on Thursday April 19th! We encourage everyone to go out and get a copy, or two, and share with your friends and family!Read More
IFCR Announces 2012 Grant Program
IFCR proudly announces its the 2012 Grant program: The International Foundation for CDKL5 Research has committed $150,000 in grants for clinical research projects to begin studying seizures, gastrointestinal and cardiovascular issues as they relate to CDKL5. In addition, IFCR is pledging an additional $200,000 in…Read More
Challenge to match $20,000 anonymous gift
As a foundation, we are very excited to inform you of a wonderful opportunity. We have received a very generous, anonymous corporate donation. This company made a $20,000 gift, and has challenged us to raise funds to match this amount – over the next two…Read More
The IFCR is now a member of NORD
The International Foundation for CDKL5 Research is very happy to announce that we are now a member of the National Organization for Rare Disorders (NORD). NORD is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through…Read More
Pajama Day to Benefit the IFCR
Each month, Central Elementary School in Grand Rapids, MI hosts a donation day with each grade (K-5)taking its turn in selecting the charity and the special day. For the month of November, Ms. Kristeen Hendsbee’s 4th grade class chose to donate to the IFCR to…Read More
Concert at the Kate Benefit Concert
In conjunction with the town of Old Saybrook, Youth and Family services and Bills Seafood, a fabulous evening took place on June 11, 2011 at the Kate in order to support “Team Avery” in their efforts to raise both awareness and funding for CDKL5 research.…Read More
Kiera’s Chuck Wagon Supper Fundraiser
On April 9, 2011, Kiera’s Chuck Wagon Supper Fundraiser for the International Foundation for CDKL5 Research was held at Eckerts Country Restaurant in Belleville, IL. Activities for the evening included silent auction, a raffle and 50/50 drawing. The host restaurant served a delicious meal and…Read More
The IFCR takes part in Rare Disease Day
February 28, 2011 is Rare Disease Day throughout the world. This year’s theme is “Rare but Equal” which will highlight rare diseases and health inequalities. On that day hundreds of patient organizations from more than 40 countries worldwide will be organizing awareness-raising activities and converging…Read More
IFCR has won $50K in the Pepsi Refresh Project!
It’s official! The IFCR is the recipient of $50,000 in the Pepsi Refresh Project for the month of October! You can now view Cure CDKL5 under Funded Ideas for the month of October on the Pepsi Refresh page. In addition to winning the grant, many…Read More