September 2025 Newsletter

Written By Heather Margrill

🩵 #Blue4ReNU Campaign Update

We’re thrilled to share that the #Blue4ReNU campaign has raised $2,869 to date—a testament to the strength and generosity of our community! Every dollar helps us push forward awareness, research, and support for families affected by ReNU Syndrome.

Participate:

  • Wear blue & share your ReNU story on social media using #Blue4ReNU

  • Encourage your supporters to donate: ReNU Hope Today

  • Host a local awareness event or fundraiser.

  • Purchase ReNU swag from our online store (attach link)

  • Encourage friends and family to donate or spread the word

🎉 Host a Fundraiser on FB for ReNU Syndrome

  1. Log into Facebook > Go to Fundraisers Page

  2. Click “Raise Money” > select “Nonprofit” as fundraiser type

  3. Search for ReNU Syndrome United - Search for & select “ReNU Syndrome United” from list

  4. Set Fundraiser Details

    • Goal Amount: Choose a fundraising target (e.g., $100, $250, $500)

    • End Date: Typically set to end a few days after your fundraising event

    • Title & Description: Facebook provides a default, but feel free to personalize it

      • Example: “For my birthday, I’m raising funds for ReNU Syndrome United to support families, research, and awareness for this rare condition. Every dollar makes a difference!”

  5. Cover Photo - Use FB default image or upload a pic of your child, family, or a ReNU event

  6. Click “Create” - Your fundraiser will go live and be shared on your timeline.

  7. Invite Friends - Personally invite friends & family to donate. FB allows you to send invites directly.

  8. Share Updates - Post thank-you messages, progress updates, reminders to keep momentum going

🧬 We NEED your help! Participate today in the ReNU Clinical Survey 

To participate, please email:  NGHI@northwell.edu

We need global participation to ensure accurate reporting and meaningful insights. The ReNU Clinical Survey is a cross-sectional study designed to:

  • Understand the spectrum of symptoms individuals experience

  • Track how these features change or progress over time

  • Empower families with data to provide optimal care

  • Support researchers in developing targeted treatments

  • Help clinicians and genetic counselors recognize ReNU Syndrome more effectively

Your voice matters—please take a few minutes to complete the survey and share it widely.

NOTE: This is a multi-step process. You will receive a consent form to sign and send back first. After you have signed the consent form, a link to the survey will be sent to your email

🎯 Strategic Funding Priorities

Our mission to advance care, research, and understanding of ReNU Syndrome is guided by five strategic priorities:

  1. Natural History Study (NHS)
    Building a comprehensive understanding of how ReNU Syndrome presents and progresses over time.

  2. RNU4-2 Biobank & Biospecimen Collection
    Establishing a centralized resource for biological samples to support future research and therapeutic development.

  3. Animal Model Development
    Creating validated models to study the biology of ReNU Syndrome and test potential treatments.

  4. Clinical Support Guidelines
    Developing evidence-based care protocols to help clinicians and families manage ReNU Syndrome effectively.

  5. Therapeutic Pipeline Readiness & Collaboration Support
    Laying the groundwork for clinical trials and fostering partnerships with biotech and academic institutions.We welcome donations, sponsorships, and collaborative opportunities to help bring these priorities to life.

🛍️ Shop ReNU Swag | 🗺️ Add Your Child to Our Global Map | 📊 Get Involved Survey

Heather Margrill