MOVE for ReNU
#MOVEforReNU - Virtual 5K Fun Run
Join in ReNU Syndrome's first #MOVEforReNU 5K fun run, a virtual event Saturday, April 26th, 2025.
While we are calling it a 5K, the idea is to have fun! Crawl, walk, sprint, or don't do any race at all! Invite your family, friends, and neighbors to participate! Registration is free. See instructions below to learn how to setup a fundraising page for your family, and invite others to join in your fundraising efforts!
Inaugural ReNU Hope Conference
REGISTER TODAY
July 24 - 25, 2025
101 James Doolittle Boulevard, Uniondale, New York, USA, 11553 | +1 516-794-3800 | Registration Terms & Conditions
eet some of the incredible researchers that made the life-changing RNU4-2 discovery
Hear from leading clinicians in the field
Connect with ReNU families on a similar journey - we’re all in this together!
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Register here for the ReNU Hope Conference! We will unite to build our ReNU syndrome community, raise awareness, and advance research.
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NY has Uber, Lyft, and taxi cabs available to get around easily. If you need a taxi from the airport, always use the taxi stand line, and do not go with anyone offering a ride from within the inside of the airport.
The primary airports are:
(JFK) John F. Kennedy Intl. Airport - 28.8 km / 17.9 mi
(LGA) LaGuardia Airport - 38 km / 23.6 mi
Other nearby airports include:
(HPN) Westchester County Airport - 65.2 km / 40.5 mi
(ISP) MacArthur Airport - 51 km / 31.7 mi
(FRG-Republic) Farmingdale, NY - 21.7 km / 13.5 mi
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There are a limited amount of reduced rate rooms available at $199 USD per night plus applicable taxes and fees for our ReNU room block:
CLICK HERE TO RESERVE YOUR ROOM TODAY
*Bookings must be made by Saturday, June 21, 2025 to be eligible for the reduced rate.
This rate may be applied to stays between Monday, July 21, 2025 through Saturday, July 26, 2025.
All reservations must be accompanied by a first night room deposit or guaranteed with a major credit card.
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Check-In: 4PM | Check-Out: 11AM
Hotel features include an indoor pool (floats not included), bar/lounge, 24-hour fitness center, and handicap accessible rooms are available upon request
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Click here to view or download a printable list of nearby attractions in NY
Arriving early? Join us for a complimentary outing at the Long Island Children’s Museum from 11am - 3pm on July 23rd, just 5 minutes drive from the hotel, prior to your check-in at 4pm.
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If you would like to present at the conference, please click here:
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Click here to access our Sponsorship Package opportunities for this inaugural momentous event.
If you have already reviewed the sponsorship opportunities, APPLY HERE.
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Please fill out this Volunteer Form if you’re interested in volunteering to either work with ReNU children or their siblings, or helping out in other ways.
If your company requires a form to be completed for your PTO charity days, we will sign off on it once approved.
All volunteers will receive complimentary admission to the conference via a discount code.
Please ensure you have your discount code prior to purchasing a ticket.
1st ReNU Syndrome Awareness Day
🎉🧬🎉 HAPPY 1st ReNU SYNDROME AWARENESS DAY!! 🎉🧬🎉
In honor of the discovery of the gene RNU4-2, the newly-formed ReNU syndrome community will be celebrating April 2 (4-2)!
The parent group has also deemed the month of April to be our awareness month and we will be celebrating internationally again on 4 February (4-2).
Our parent group that started in May as 3, 2025 has grown to over 400 members and continues to increase rapidly by the day!
💕 Thank you to all researchers, clinicians, scientific advisory board, and supporters - we are grateful for you today and every day! 🫶
Please spread awareness and invite your networks to check out the latest map with over 100 entries in over 20 countries, the pictures and stories about our ReNU Warriors, our donation link, and conference information. Let’s continue to #ReNUhope together!
Rare-X Registry Info Session
Save the date to join the Rare-X Registry Info Session | Get Started Using Rare-X
Learn how to access the registry so we can save ReNU medical information in one place! It is critical that ALL patients join the registry because researchers want to find therapeutics for groups that have the most amount of collected data, so uniting on a global level is one of the best things we can do to help advance research and treatment development for all of our families.
Check out the recording of our info session: Intro to the Rare-X Registry
