Csnk2b Foundation

Csnk2b Foundation CSNK2B Foundation's mission is to bring awareness and education to CSNK2B Neurodevelopmental Syndrome

It is the mission of the CSNK2B Foundation to bring awareness and education to CSNK2B Neurodevelopmental Syndrome and to enrich the lives of those affected by accelerating research, treatments and by chasing a cure for CSNK2B. We aim to fulfill our mission by:

- Acting as an international group by supporting all affected by CSNK2B.
- Educate caregivers and medical professionals about CSNK2B.
-

Fund research regarding the CSNK2B mutation.
- Collaborate with our medical advisory board to facilitate research and treatments.

04/23/2026

🩺 Preparing for Appointments Just Got Easier

Medical appointments for CSNK2B Neurodevelopmental Syndrome (POBINDS) can feel overwhelming — especially when you’re trying to track new symptoms, therapies, and changes over time.

That’s where Citizen Health’s AI Advocate makes a real difference.

✨ It summarizes key updates from your child’s medical records
✨ Identifies meaningful changes you may want to discuss
✨ Highlights questions to ask your providers
✨ Helps you walk into appointments organized, confident, and ready

When you understand the full picture, you can make the most of every minute with your care team.

👉 Join the 100 in 100 Day Campaign and see how Citizen Health can support your family’s journey.
https://www.citizen.health/ai-advocate/csnk2b-foundation

⏰ Last Call for T‑Shirt Guarantee!  Today is the FINAL day to order your CSNK2B Awareness Days t‑shirt and have it arriv...
04/20/2026

⏰ Last Call for T‑Shirt Guarantee!

Today is the FINAL day to order your CSNK2B Awareness Days t‑shirt and have it arrive ahead of May 1–3.

If you donate $75 US/$90 Internationally after today, you can still get a shirt — it just won’t be guaranteed to arrive before Awareness Days (especially for international shipping).

Show your support, wear your shirt proudly, and join us as we raise awareness for Together for CSNK2B 💙💜

Families First. Science Forward. Hope Always.

👉 Donate here: https://secure.givelively.org/donate/csnk2b-foundation/csnk2b-awareness-days-2026

04/16/2026

❓ Do you have a question about joining , registering, or completing a survey? We’re here to help.

Our team is ready to support you every step of the way.

đź’¬ Contact form: simonssearchlight.org/about-connect/
đź“§ [email protected]
📞 855-329-5638 (Mon–Fri, 8 AM–4 PM EST)

Don’t hesitate to reach out—we’re here to make your experience seamless and supportive 💙

👕 CSNK2B Awareness Days T‑Shirts Reminder!Donate $75 (US) / $90 (International) by Monday, April 20 to receive your Awar...
04/15/2026

👕 CSNK2B Awareness Days T‑Shirts Reminder!

Donate $75 (US) / $90 (International) by Monday, April 20 to receive your Awareness Days t‑shirt ahead of our CSNK2B Awareness Days.

💛 May 1–3, 2026 is almost here, and we’re coming Together for CSNK2B—supporting families, advancing science, and building hope.

✨ PLUS, your gift will be doubled thanks to a $50,000 matching donor!

👉 Donate or start your team today:
https://secure.givelively.org/donate/csnk2b-foundation/csnk2b-awareness-days-2026

Families First. Science Forward. Hope Always.

CSNK2B Awareness Days are coming—May 1–3, 2026!This year, we’re celebrating under the theme Together for CSNK2B, honorin...
04/10/2026

CSNK2B Awareness Days are coming—May 1–3, 2026!
This year, we’re celebrating under the theme Together for CSNK2B, honoring the strength of our families and the science that moves us forward.

We’re inviting families around the world to create fundraising teams to support the CSNK2B Foundation’s 2026 research goals. Every team, every share, and every donation fuels progress for our loved ones.

✨ Your impact will be doubled!
A generous donor has offered a $50,000 match, doubling every dollar raised.

👕 Awareness Days T‑shirts
Make a donation of $75 US / $90 International by Monday, April 20 to receive your t‑shirt. (International shipping may arrive later.)

👉 Donate or start your team here:
https://secure.givelively.org/donate/csnk2b-foundation/csnk2b-awareness-days-2026

đź’› Not able to fundraise? You can still participate!
If fundraising isn’t possible for you, we encourage you to create a meaningful in‑person event instead—gather together to walk in the park, take a hike, or host a small meetup that highlights and honors those living with CSNK2B. Awareness, connection, and visibility matter just as much.

Families First. Science Forward. Hope Always.

CSNK2B Awareness Days are coming—May 1–3, 2026! This year, we’re celebrating under the theme Together for CSNK2B, honoring the strength of our families and the science...

🌟 Your CSNK2B Journey Matters 🌟When you join our Citizen Health -100 in 100 Campaign, you’re not just signing up—you’re ...
04/10/2026

🌟 Your CSNK2B Journey Matters 🌟
When you join our Citizen Health -100 in 100 Campaign, you’re not just signing up—you’re standing with a community determined to transform neurodevelopmental care for generations.

Every breakthrough starts with families willing to share their stories. Together, we can turn individual challenges into collective progress, building a future with deeper understanding, more effective treatments, and stronger support for every child navigating a neurodevelopmental condition.

👉 Sign up today: https://www.citizen.health/ai-advocate/csnk2b-foundation

đź’¬ Frequently Asked Questions
Q: How long does it take to sign up?
A: About 5 minutes to create your account. After that, Citizen Health handles collecting your child’s medical records for you.

Q: Is my child’s data secure?
A: Yes. Citizen Health uses HIPAA‑compliant storage, industry‑leading encryption, and strict privacy protections. Your child’s information is safe and only shared according to your preferences.

Q: Is the AI Advocate medical advice?
A: No. AI Advocate helps you understand and organize your child’s medical information based on their actual records. It does not provide medical advice, diagnosis, or treatment recommendations. Your data stays private within Citizen Health and is never shared with third‑party AI companies.

Q: What if we see multiple specialists?
A: That’s exactly where Citizen Health shines. It gathers records from all your child’s providers and organizes them in one place—giving you a complete, easy‑to‑understand picture of their care.

Q: Which neurodevelopmental conditions are included?
A: Citizen Health welcomes all families navigating neurodevelopmental journeys, including those involving autism, ADHD, epilepsy, learning differences, communication challenges, motor coordination variations, and rare genetic conditions. Every experience matters and contributes to our shared understanding.

Q: How does this help advance treatments?
A: By building comprehensive digital natural history studies, researchers can better understand how conditions develop over time, identify treatment targets, and design more effective clinical trials—ultimately leading to new therapies.

Transform hours of medical paperwork into instant answers with Citizen Health's AI Advocate. Built by rare disease families, for rare disease families, get answers to your questions about medications, treatments, and care coordination for rare diseases. Trusted by 50+ patient advocacy groups.

📣 Simons Searchlight Releases New Quarterly Reports! 📣📊 Your Simons Searchlight April 2026 quarterly report is here—with...
04/09/2026

📣 Simons Searchlight Releases New Quarterly Reports! 📣

📊 Your Simons Searchlight April 2026 quarterly report is here—with updated insights and fresh data on individuals with CSNK2B (CSNK2B Neurodevelopmental Syndrome), powered by families like yours.

Check out the valuable information in this report here:

https://bit.ly/CSNK2BReports

These reports are based on medical history information generously shared by participants and include data in four key areas:

• Age Ranges

• Developmental and Behavioral Conditions

• Neurological Conditions

• Gastrointestinal Conditions

They also feature community participation progress numbers, showing how families are actively moving research forward.

💡 By completing surveys over time, you're helping researchers better understand your condition and how it changes across the lifespan. Together, we’re turning limited knowledge into meaningful discoveries—for your family and others in the future.

Thank you for being part of this important work! đź’™

*Not a current Simons Searchlight participant? Learn how you can contribute to our study and be included in future reports:

https://bit.ly/Why_Join_Simons_Searchlight

An opportunity for our CSNK2B families to share their journey caring for their loved one from childhood to adulthood:đź’™ H...
04/08/2026

An opportunity for our CSNK2B families to share their journey caring for their loved one from childhood to adulthood:

đź’™ Have You Supported a Dependent Into Adulthood?

Share Your Story With Simons Searchlight!

The transition to adulthood is more than a milestone. It is an emotional journey filled with questions, decisions, and change.

As young people with rare genetic conditions grow up, families navigate independence, care, and shifting roles in deeply personal ways.

If you have been through this, your experience can help us better understand and better support families on this path.
✨ Support other families
✨ Shape meaningful resources
✨ Strengthen lifelong research

Share your story and help guide what comes next:

https://bit.ly/Transition_To_Adulthood

🛡️ Your Family’s Privacy Comes FirstFamilies navigating CSNK2B Neurodevelopmental Syndrome (POBINDS) deserve absolute co...
04/01/2026

🛡️ Your Family’s Privacy Comes First
Families navigating CSNK2B Neurodevelopmental Syndrome (POBINDS) deserve absolute confidence that their personal information is handled with care, respect, and transparency. Partnering with Citizen Health allows families to safely contribute to progress—without sacrificing privacy or control.

đź”’ How Citizen Health Protects Your Data
HIPAA‑compliant data storage to meet the highest healthcare privacy standards
Strong encryption to keep personal and medical information secure
Consent‑driven sharing, so families decide:
👉What information is shared
👉When it is shared
👉Who can access it

🤖 Clear, Honest Use of Technology
No data is shared without explicit consent
Personal health information is not used to train external AI models
Your child’s CSNK2B information remains private, protected, and under your control at all times

🤝 Why This Matters for CSNK2B Families
Secure data sharing helps advance understanding, awareness, and research for CSNK2B
Families can participate confidently, knowing privacy is never compromised
Trust and transparency are central to everything Citizen Health and the CSNK2B Foundation do together

🚀 Take Action: Be Part of the Change
By participating, families can help strengthen the CSNK2B community—safely and securely.

👉 Sign up for the CSNK2B Foundation’s 100 in 100 Days campaign today and contribute with confidence while protecting what matters most. https://www.citizen.health/ai-advocate/csnk2b-foundation

💜 Exciting Opportunity for Our CSNK2B Community! 💜We’re honored to be members of an incredible network of Patient Adviso...
03/30/2026

đź’ś Exciting Opportunity for Our CSNK2B Community! đź’ś
We’re honored to be members of an incredible network of Patient Advisory Groups through the Rare Epilepsy Network (REN)—and they’re inviting YOU to help make a difference! 🙌

REN is offering a paid research opportunity for individuals and families affected by rare epilepsy syndromes. Your lived experience matters, and your voice can help shape future care, research, and advocacy.

👇 See details below and reach out if you have questions!

✨ THE OPPORTUNITY
REN is conducting a research study to better understand the real‑world experiences of those impacted by rare epilepsy syndromes.

👥 WHO CAN PARTICIPATE?
You may be eligible if you are:
• An adult (18+) living with a rare epilepsy syndrome
• A caregiver of someone with a rare epilepsy syndrome
• A representative of an epilepsy advocacy organization
• A healthcare provider or researcher in the rare epilepsy space

📝 WHAT’S INVOLVED?
• One online baseline survey (40–60 minutes)
• Optional follow‑up surveys every 4–6 months for up to one year (30–40 minutes each)
• Topics include daily experiences, treatment history, quality of life, healthcare access, and research priorities
• Questions are customized based on your role

đź’ł COMPENSATION
âś… $100 Amazon gift card for each completed survey
âś… Delivered by email within one week of completion

đź”’ YOUR PRIVACY MATTERS
• Surveys are completed on a secure, encrypted platform
• Your name is never directly connected to your answers
• All published results are fully de‑identified

Participation is completely voluntary. You may skip any question or withdraw at any time—while still receiving compensation for surveys you’ve already completed.

🌟 WHY PARTICIPATE?
Your insights will help:
• Improve understanding of rare epilepsy care
• Identify unmet needs
• Guide future research and advocacy efforts

➡️ Ready to get started or learn more?
Click here: https://rareepilepsynetwork-org.pmailroute.net/x/d?c=50580640&l=6c868ead-37d5-4012-a6bd-f990794b3822&r=447a1c59-787d-49c7-9098-3bdb732d7dcf

Thank you for helping move rare epilepsy research forward—together, our voices are powerful. 💪💜

Address

Elmwood Park, NJ

Telephone

+15152989592

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