ReNU Connect: Let's Hang Out! (virtually)
ReNU Connect: Let’s Hang Out! (virtually)
8pm EST / 5pm PST | Webinar for Parents to connect in a private setting. Details to join available via FaceBook support group.
What is ReNU Connect? Great question!
ReNU Connect, hosted by author/speaker/advocate/ReNU mom Kelley Coleman, is a time for ReNU families to get to know one another, to hang out virtually, and to just spend time with people who get us. Think of it as community building that we’re building together. We’ll laugh, we’ll cry, we’ll most likely talk about elevators, airplanes, and really cool toys with blinking lights (sound familiar? same here).
Wherever you are on your ReNU journey, we’d love to see you there.
*These meetings are not a substitute for professional medical, legal, or therapeutic advice or treatment, and that shared information is for educational/peer support purposes only. The platform is not secure/private and anyone in this group, moderators, administrators & ReNU Syndrome United members are not liable for anything pertaining to these meetings or any user-posted content. Abusive, defamatory, or solicitous material is strictly prohibited.
North Texas Move4ReNU Walk & Picnic
Save the Date! North Texas ReNU Syndrome #Move4ReNU Walk
Bear Creek Park, Keller, TX — Pavilion 3 | Saturday, May 2 | 4:00-7:00 PM CT
Join us for an afternoon of connection, community, and hope. We’ll be grilling hot dogs, taking a stroll together, and spending time with fellow ReNU families.
Bring a yard chair and something to drink—we’ve got everything else covered. Whether you’re local to North Texas or want to travel in, everyone is welcome. Invite your family and friends.
Let’s ReNU hope together.
ReNU Learn: The Sibling Experience
ReNU Learn: The Sibling Experience
8pm EST / 5pm PST | Webinar for Parents to connect in a private setting. Details to join available via FaceBook support group.
Webinar for Parents to connect in a private setting. Details to join available via the FaceBook support group.
Wondering how to best support and honor the experience of the siblings of our ReNU kids? Great, you’ve come to the right place.
Join The Sibling Experience with Amanda Own, Abigail Turnwald, and some awesome ReNU siblings.
Amanda Owen’s experience as a sibling of a brother with a rare chromosomal disorder has shaped her career and passions, from founding Puzzle Pieces, to writing a book, and to being a leader and change-maker in inclusion, empowerment, and visibility of people with disabilities.
Abigail Turnwald serves as a Genetics Counselor at Cincinnati Children’s Hospital, combining her love of science and deep experience working with people with disabilities. Her areas of expertise include epilepsy genetics, partnering with families through the genetic testing process, and mental health and support of siblings of kids (and adults!) with disabilities.
Along with some guest star ReNU siblings, we’ll discuss what it’s like when your sibling has a disability and what parents can do to best support all of our kids. Conversation with Q&A to follow.
*These meetings are not a substitute for professional medical, legal, or therapeutic advice or treatment, and that shared information is for educational/peer support purposes only. The platform is not secure/private and anyone in this group, moderators, administrators & ReNU Syndrome United members are not liable for anything pertaining to these meetings or any user-posted content. Abusive, defamatory, or solicitous material is strictly prohibited.
US ReNU Syndrome Awareness Day
💙 4/2 is US ReNU Syndrome Awareness Day 💙
Today, we wear blue—and we show up and we shine!
We show up for awareness.
We show up for families.
Post your blue. Tag us.
Help spread the word.
Move4ReNU
Move4ReNU
Throughout the month of April, we invite ReNU families and supporters everywhere to come together—locally and globally (virtually)—to move in ways that work for you and help raise awareness and funds for ReNU Syndrome United. The official "move" date is April 25th, but since this is a virtual event, you are welcome to move anywhere/anytime during April. Some move examples are running, walking, golfing, or swimming.
ReNU Learn: Parent Caregiver Mental Health
Parent Caregiver Mental Health with Amanda Griffith-Atkins
12pm EST / 9am PST | Webinar for Parents to connect in a private setting. Details to join available via FaceBook support group.
Let’s talk about how we’re really doing. Our guest Amanda Griffith-Atkins is an LMFT, rare disease mom, and author of the book How to Handle More Than You Can Handle: Caring for Yourself While Raising a Disabled Child.
She gets us - the complexity, challenge, and everything it takes to raise our kids as the best version of ourselves as lifelong caregivers.
*That these meetings are not a substitute for professional medical, legal, or therapeutic advice or treatment, and that shared information is for educational/peer support purposes only. The platform is not secure/private and anyone in this group, moderators, administrators & ReNU Syndrome United members are not liable for anything pertaining to these meetings or any user-posted content. Abusive, defamatory, or solicitous material is strictly prohibited.
Family Meetup - Adelaide, Australia
First meeting of two ReNU Children Holt (6) & Abbey (17) in Adelaide, Australia.
Pool party in the Adelaide Hills for two families to meet, the siblings and parents to share stories.
First meeting of two ReNU Children Holt (6) & Abbey (17) in Adelaide, Australia.
Giving Tuesday
Giving Tuesday - December 2nd!
Giving Tuesday is a global giving movement unleashing the power of radical generosity during the end-of-year giving season. Giving Tuesday was created in 2012 as a simple idea: a day that encourages people to do good following the traditional holiday shopping days of Black Friday and Small Business Saturday. Since then, it has grown into a global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity.
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!
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
