Over the past 15 years the IFCR has worked diligently to fund research, working alongside clinicians to create a better understanding of the disease and improved quality of life for our loved ones, all while building an informed and engaged community.
Our programs provide support for thousands of people, including family members, researchers, clinicians, and friends around the globe. Have you visited our website or read our newsletter? Downloaded a parent guide? Had a call with a family support representative? Visited a COE? Participated in an observational study or clinical trial? Attended a conference or family gathering? All of these resources and programs are either created by the IFCR or supported through collaborative efforts.
Would you like to join Team IFCR in our efforts?
The IFCR has opportunities for everyone to get involved. Perhaps you have an hour a month to give, or maybe you have more. We appreciate any level of volunteerism! This opportunity is not limited to parents and caregivers, but also for anyone who wants to help!
Here are some ideas:
Do you enjoy social media engagement, content building, or marketing?
Do you have technical skills with website design?
Do you have peer to peer or corporate fundraising experience?
Do you enjoy communicating with and supporting other families?
Do you have experience with grant writing?
Do you have a skill set that you think would benefit the IFCR?
A generous supporter is matching all donations up to $30,000 until the end of 2024 for our End of Year Giving Campaign!
Campaign Opportunities:
Giving Tuesday is a huge opportunity for our community. Please be watching and ready to share our social media campaign around this day of giving. We hope many will set up personal social media fundraisers for Giving Tuesday with the IFCR as the beneficiary!
If you work for a company that does corporate matching, this is a way to further multiply your donations!
The UCB GEMZ Study has lowered the enrollment age to include patients from 1 to 35 years old. If you are interested and would like to learn more, please click the link below to visit our page on research and clinical trials!
Also, we shared a survey in the spring, and if you did this, we thank you! If you did not, please consider participating. It will take approximately 10-15 minutes to complete. You can use this link or the QR code below.
Thank you to our Outgoing Board Members!
We want to thank Amanda Jaksha and Marissa Bishop for their years of dedicated service to the IFCR and the CDKL5 Community. Amanda served on our board for 10 years and Marissa served for four years, and both volunteered before their board position. Both ladies were always willing to use their skills in any way possible to help advance our mission. Amanda served as treasurer for seven years, and Marissa was the mastermind behind our Move CDKL5 Forward Event and always did a great job with our social media and communications. Their work has made a lasting impact and has truly shaped the legacy of the IFCR. Please join us in thanking them for all they have done.
Follow us on:
Would you like to forward this email to a friend? Click here.
