Fundraising
Fundraising is the backbone for research leading to treatments for our 5p- syndrome loved ones. We know everyone has different circumstances—whether you're working, raising children, or managing daily life alongside caregiving. The good news? Every contribution, no matter the size, takes us closer to treatments our loved ones deserve.
Ready to start? Make a donation now → or explore the ideas below to find what works for you.
For our full list Creative Fundraising Ideas, click here to download.
Current Research Funding: Where Your Donations Are Making a Difference
Your contributions are directly funding groundbreaking research that could change the lives of individuals with 5p- syndrome. Browse through the projects on the right-hand side to see how your donations are being put to work.
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$50,000 | UC Davis Nolta Lab
What we're studying: How 5p- syndrome affects brain cell development at the genetic level
The goal: Identify which genes are disrupted in 5p- syndrome to better understand the condition and find treatment targets
How we're doing it:
Comparing brain stem cells from people with 5p- syndrome to healthy controls
Testing which genes are turned "off" or "down" in 5p- cells
Tracking how these genetic changes affect brain cell development
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$100,000 | UCSF Ahituv Lab
What we're developing: A potential gene therapy using CRISPR technology to "turn on" the CTNND2 gene
The goal: Restore normal function of a key gene (CTNND2) that's missing in 5p- syndrome
How we're doing it:
Using CRISPR activation to boost CTNND2 gene expression
Testing this approach in brain cells derived from 5p- syndrome patients
Optimizing the treatment for maximum effectiveness
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$80,000 | Mazhi Therapeutics & iXCells Biotech
What we're developing: A targeted drug therapy (ASO) to restore CTNND2 function
The goal: Create a treatment that can be administered to patients to improve CTNND2 gene function
How we're doing it:
Developing antisense oligonucleotides (ASOs) that specifically target CTNND2
Testing these potential drugs in 5p- syndrome cell models
Preparing for future clinical trials
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$155,000 | Charles River Laboratories
What we're searching for: Existing drugs that could help treat 5p- syndrome symptoms
The goal: Find treatments that are already FDA-approved and could be quickly repurposed for 5p- syndrome
How we're doing it:
Testing thousands of existing drugs on cells from 5p- syndrome patients
Identifying which drugs improve cell function
Understanding which biological pathways are most important for treatment
Ready to make a difference?
Set up your own fundraising campaign through Bloomerang and help us support families affected by 5p- syndrome.
Quick & Easy Ideas
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Birthday Fundraisers
Your child's birthday: Ask for small gifts and add a donation jar to the gift table for 5p- syndrome research
Your birthday: Set up a Facebook fundraiser (Facebook makes it easy with prompts!). Be the first to donate to encourage others, then share with your community
Workplace birthdays: Ask colleagues to skip flowers and donate instead—offer them cake in return
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Social Media Campaigns
Join CDCRF's larger fundraising campaigns by setting up a local fundraiser under the main campaign
Share more than once—social media moves fast and people donate based on emotions, so your opportunity might get lost if only shared once
Update daily with adorable new pictures of your loved one with 5p- syndrome to keep engagement high
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Food-Focused Fundraisers
Pop-up café: Host a one-day café in your garden with friends and family helping with preparations. Make beautiful posters about 5p- syndrome and create an educational, delicious experience
Food fest: Organize a weekend event at your local park or playground. Make cakes, cookies, lemonade—whatever you can create. Ask family and friends to contribute food too
School partnerships: Partner with school/kindergarten family days or nearby community festivals
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Sports & Games
Local sports clubs: Host a game day lasting 2 hours or longer. Provide refreshments and create posters about 5p- syndrome and CDCRF
Fun day in the park: Organize games and sports at a local stadium, community festival, or even in front of your house. Get prizes donated (pizza, cake, movie tickets) for winners
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School Fundraisers
Dress down day: Ask private schools to let students pay $5 to skip uniforms for 5p- syndrome research
Pajama day: Have public schools host a pajama day with $5 donations to raise funds for CDCRF
Combine with education: Hand out information about the syndrome and CDCRF's mission to raise awareness
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Restaurant Fundraising
Partner with restaurants to fundraise through hosting events, "dine to donate" days, or requesting donations—with many popular chains like Chipotle, Pizza Hut, and Panera offering 15-30% of proceeds to participating organizations.
Our comprehensive restaurant fundraising guide includes step-by-step planning tips, a complete checklist, and a list of participating restaurants to make your fundraising event successful and stress-free.
Tips for Success
Getting Started
Start small: Not everyone can host big galas, and that's perfectly okay. One day you might find resources for what today seems unthinkable
Be authentic: If you're not ready to be open about 5p- syndrome or special needs, ask friends to help you organize
Think annual: If your event is fun, the same people will come back each year
Maximizing Impact
Be active and visible: Kind people and charity organizations will notice your efforts. One national charity in Estonia noticed a Facebook fundraiser and supported CDCRF research with $23,000!
Channel goodwill: Help people direct their desire to give toward improving quality of life for our loved ones
Remember the why: Fundraising can feel uncomfortable, but remember the reason—every contribution brings us closer to treatments
Ready to Make a Difference?
Every donation gives strength because it shows support—and support is essential for every CDCRF project. These projects simply won't happen without community backing.
Donating can become a natural part of our lives. Yes, fundraising can be hard and sometimes uncomfortable, but remember why you're doing this: quality of life improvements for our loved ones.
Together, we're making a difference. Thank you to all who have launched fundraisers for CDCRF!