Join Team LuLu Rose
Hosted by
Lucas John Foundation & Ilsa Rose Foundation
Virtual Walkathon
for NKH
Walk in place as we shelter in place.
Turn steps into dollars for charity
Like many other organizations, we rely heavily on public events to raise money for NKH research. In light of our current global state, we decided to host a virtual "walk-a-thon" to raise funds for NKH research and awareness. Each Zoom the Room Team will host a Zoom meeting on their respective date. We will walk, ride, laugh, and enjoy the company of each other, from afar. We urge you to get involved in the first ever Zoom the Room and help us as we continue our fight to save the lives of hundreds of children around the world.
Entertainment and Special Guests
Host: Dave Spect owner of Improvmania (Chandler, AZ) will host our event to keep us entertained and laughing as we walk virtually!
Special Guest Speakers:
Opening Prayer
Dr. Kasturi - Notre Dame Gene Therapy Research
Sarah Steel - Fitness Tips for staying active at home
Nutritionist Amy - Healthy eating tips
Dr. Greene - UCL London NKH Message
Online Silent Auction 100% of Proceeds to be donated to our cause
Ads from our Sponsors
Team LuLu Rose Registration
Everyone who registers will recieve a Zoom the Room T-shirt to wear during the event!
Sponsored By HOTO Screen Printing
Event Timeline
Coming Soon!
Zoom the Room is just around the corner!
May 16, 2020, 9:00 am PST (12:00 pm EST, and 4:00pm BST)
Thank You to Our Sponsors
Frequently Asked Questions
A virtual walk via Zoom, to raise money for NKH research and build awareness about the rare genetic condition.
Nonketotic hyperglycinemia is a rare genetic condition affecting about 500 people world wide. It's considered an orphaned disease, which means all research funding is provided only by the families of those affected.
Zoom the Room proceeds will go directly to those researching gene therapy, the only potential cure for NKH.
When you register you will be given the option to receive a special Zoom the Room T-shirt! You can wear this, or maybe dress in a quirky costume, or just whatever you choose to wear for the day! Zoom the Room is a come as you are event.
You will receive an email prior to the event. The email will have a zoom link in it. Click that link and use Zoom on your smart phone, tablet, or computer. You can choose to download the Zoom app or just use Zoom via your web browser. The email will also include detailed information on navigating Zoom, how to share your video feed, how to use the audio functions, and so on.
We encourage you to invite as many people as possible to register! You can register your whole family and use several devices to Zoom the Room, or you can all gather together wherever you are in your home. If your family is not under the same roof, simply share the Zoom link so they can participate too! Zoom the Room is for everyone!
NO! You can participate in Zoom the Room by sitting on your couch, playing with your children, hanging out on your porch, however you wish! We do encourage activity, but we understand that some may not what to walk in place, or climb their stairs. No matter how you Zoom the Room you are welcome to join our event for some fun, light hearted entertainment!
You can share our event on social media, invite your friends and family to register. You can even donate directly to your team in support of this event as a sponsor!