Cyfip2 Network

02/28/2026

This Rare Disease Day, one of the most powerful things you can do is make sure your loved ones are counted.

That’s why we’re asking you to join our CYFIP2 Patient Registry.

When you register, you are helping us:

• Show researchers and biotech companies that our community is real and growing
• Strengthen grant applications and funding opportunities with real data
• Identify patterns that may guide future research and treatment development
• Accelerate readiness for clinical trials and emerging therapies

Rare Disease Day is about visibility. It’s about advocacy. It’s about action.

By registering, you are turning your family’s journey into data that can drive science forward. You are helping ensure that no child with a CYFIP2 diagnosis is overlooked.

If you haven’t signed up yet, today is the perfect day. There is no cost, no clinic visits, and you control your data.
👉

CYFIP2 - Data Collection Program CYFIP2-related disorders patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By gen...

01/26/2026

‼️Please read the following letter coordinated by the American Society of Gene and Cell Therapy (ASGCT). The CYFIP2 Network has signed on in support of reauthorizing the Rare Pediatric Disease Priority Review Voucher (PRV) program.

“The PRV program has proven to be a powerful catalyst for therapeutic development. Since its creation, 63 PRVs have been awarded across 47 rare pediatric diseases. Prior to the creation of the program, only 4 of these 47 diseases had any FDA-approved treatments. Of the total 569 drug and biologic products granted rare pediatric disease designation between 2013 and 2022, 160 were gene therapies and 22 were antisense oligonucleotides (A*Os).”

ASGCT is proud to lead nonprofits, academic medical centers, and patient advocacy groups in urging Congress to pass the Mikaela Naylon Give Kids a Chance…

01/24/2026

It’s the last week to order and we’re 12% of the way towards our goal.

🗓 Order by January 30th to help us continue CYFIP2 research efforts: https://shorturl.at/zSW7L

Thank you to everyone who ordered and shared!

01/22/2026

Them: “Don’t listen to anyone. Your child will develop.”
CYFIP2 Arg87Cys parents: Out here quietly doing it all…

01/22/2026

7am: making a full days worth of blended G-Tube meals for the little man.

We currently use a combination of different foods in the recipe so that Lucas can have less volume at each meal, but with increased calories. This helps us to make sure any feeding intolerance throughout the day doesn’t affect his overall calorie and nutrient intake.

A proper blender is a must-have! Especially when adding cooked foods like chicken breast (which we do often for added protein).

Water is also important. Not just for adequate hydration but also to ensure the blended recipe can pass through the tube without clogging.

We store the entire blender container in the fridge and pour for each meal throughout the day. This also helps to simplify things for our home nurse while I’m at work.

This video is for informational purposes only. I am not affiliated with, sponsored by, or endorsed by any of the brands shown. Every child’s nutritional and medical needs are unique, please consult your child’s care team before trying new foods or changes to a feeding regimen.

01/22/2026

CYFIP2 Symptom of the Week: Seizures

Seizures are one of the most common and challenging symptoms reported in individuals with CYFIP2-related disorders. They can vary widely from child to child: in type, frequency, and severity... and may change over time.

For many families, seizures don’t just impact medical care. They affect sleep, daily routines, school, therapies, and peace of mind. Even when seizures are controlled, the fear of recurrence can remain a constant weight.

Families managing CYFIP2 often juggle:
• Multiple medications
• Frequent EEGs and neurology visits
• Emergency plans
• The emotional toll of uncertainty

You are not alone in this.

💙 Why Research Matters

Understanding why seizures occur in CYFIP2 and how best to treat them is critical. Ongoing research helps:
• Identify targeted treatment approaches
• Improve seizure management strategies
• Reduce trial-and-error medication use
• Move us closer to meaningful therapies

Research is the path forward.

🤝 How You Can Help

If you are looking for a way to support families and advance CYFIP2 research, donations to the CYFIP2 Network directly fund research initiatives and progress toward future treatments.

Every contribution, large or small, helps move this work forward.

🔗 Donate here: https://secure.givelively.org/donate/cyfip2-network-inc/a-cure-for-cyfip2-dee

💬 Families: You TOO can help advance the research for treatment development. The science is here, we know what to do. Funding is where our community falls short. Start a fundraiser using the link below or share the link!

The CYFIP2 Network is a group of parents, friends, researchers and supporters all working to find a cure for CYFIP2 Developmental and Epileptic Encephalopathy (also ca...

01/20/2026

This is YOUR reminder to sign up for the CYFIP2 Data Collection Program!

Register today, from home & at no cost: https://rare-x.org/cyfip2/

Why your participation matters:
📊 Stronger research: More data helps researchers understand CYFIP2 more clearly and identify meaningful patterns.
🧬 Faster treatment development: Registries are often required to attract funding and industry partners for drug development.
🩺 Better clinical guidance: Shared data helps define symptoms, progression, and outcomes, informing doctors worldwide.

01/20/2026

Every purchase helps us to continue funding CYFIP2 research!

🗓 Order by January 30th: https://shorturl.at/zSW7L

01/19/2026

This Valentine’s Day, share something sweet that makes a real difference. We’ve teamed up with See’s Candies for our Sweets for CYFIP2 fundraiser! 🍫

A portion of every purchase is donated to help us continue funding CYFIP2 research!

🗓 Order by January 30th: https://shorturl.at/zSW7L

It’s a gift that keeps on giving, sweet for your loved ones and impactful for our community.

Already have your chocolate? You can still help by sharing this post!

Thank you for supporting CYFIP2 research and spreading love this Valentine’s Day ❤️

Shop See's Candies and support Sweets for CYFIP2. Your purchase helps raise funds for a great cause — delicious treats, meaningful impact!

01/14/2026

From the bottom of our hearts: thank you for helping move CYFIP2 research forward. 💙🧬

We want to thank each and every person who supported the CYFIP2 Network in 2025. Because of your generosity, $34,823 was donated to the CYFIP2 Network last year. Even more importantly, $15,467 of those funds were granted directly toward CYFIP2 research, helping scientists study potential treatments and move us closer to real, targeted therapies.

It's because of YOU that we are able to do this. THANK YOU.

01/13/2026

Today, we signed on to a letter from the American Society of Gene & Cell Therapy (ASGCT) in support of the reauthorization of the Priority Review Voucher (PRV) program.

The PRV program plays a critical role in encouraging investment in rare disease research and accelerating the development of innovative therapies, especially for ultra-rare conditions like CYFIP2. Supporting its reauthorization helps ensure that families continue to have hope for meaningful treatment options.

To learn more and support the PRV program's reauthorization, visit:

Our fight to reauthorize the Rare Pediatric Disease PRV Program continues. Please join us in urging your members of Congress to reauthorize this critical program by passing the Give Kids a Chance Act of 2025 (H.R. 1262) in the House and a soon-to-be-introduced companion in the Senate.

01/12/2026

Family Update from Lucas's Mom, Michelle:

This weekend, we woke up to some very exciting news! If you’ve been following our journey, you may know that Lucas was accepted to receive a personalized A*O treatment and for a long time, we did not where we were in the process. But now we do! CYFIP2 is now listed as an active gene program and that means Lucas has an allele-selective A*O in development!

To now know that a personalized medicine is being made specifically for Lucas is overwhelming in the best way.

We are so deeply grateful to those who believed in our son, believed in our family and for taking on this work. We know that we still have many steps ahead, but we are so excited for Lucas and that the progress is now visible. 🩵 We hope you'll continue to follow our journey as we continue to wait for Lucas to receive the treatment!