Dine for Discovery: An IRF2BPL Research Fundraiser

Join Einstein for the Kids in Supporting Yellow For Yiannis

We are Einstein for the Kids, a dedicated student group comprised of passionate neuroscientists. Our focus is to advocate, raise awareness, and drive meaningful action for rare neurodevelopmental disorders. Currently, we're embarking on an exciting journey to illuminate the lives of those diagnosed with an ultra-rare genetic disease known as NEDAMSS, stemming from mutations in the IRF2BPL gene. These conditions, marked by progressive neurodevelopmental decline, demand our urgent attention and action.

What is NEDAMSS and IRF2BPL-related disorder?
NEDAMSS (standing for Neurodevelopmental Disorder with Regression, Abnormal Movements, Loss of Speech, and Seizures) is a rare neurodegenerative disease that affects children with mutations in the IRF2BPL gene. Patients diagnosed with IRF2BPL-related disorders experience typical development until approximately 3.5 years of age, after which they undergo a rapid onset of developmental regression, including developmental delays, loss of speech, abnormal movements, and seizures, which significantly impair their ability to walk, talk, and eat. As the symptoms progressively worsen, individuals with these disorders often require comprehensive medical support, including g-tube feeding for nutrition and mechanical respiration for breathing. The quest for understanding is spearheaded by remarkable organizations like Yellow For Yiannis and pioneering scientists like Dr. Pawel, who tirelessly seek answers and solutions for those affected.

Fundraising Goal
Our mission is twofold: to fund groundbreaking research on this rare condition and to provide unwavering support to families navigating the complexities of IRF2BPL disorders. Your contribution has the power to fuel this critical work, offering hope and potentially life-saving breakthroughs for those in dire need. Yellow for Yiannis, is a 100% nonprofit organization dedicated to researching IRF2BPL and helping the families affected by it. They’ve already helped kids with IRF2BPL get custom car seats, access medical care, and receive other necessities to make their lives a little easier.

A Night to Remember
Join us for a special evening at [Restaurant Name] where your dining experience can change lives. A portion of the night's proceeds will be donated to the Yellow for Yiannis Organization, dedicated to advancing IRF2BPL research and supporting affected families. Together, we can turn a simple night out into a beacon of hope for many.

How You Can Help

Attend our event: Mark your calendars and be part of this unique opportunity to dine with purpose.
Donate: Every contribution, big or small, brings us closer to a breakthrough. Donations are fully tax-deductible and can be made directly through this page.
Spread the word: Share our mission with friends and family. The more people know, the bigger impact we can make.

The journey toward finding treatment options for IRF2BPL-related disorders is daunting but not insurmountable. With your support, we can provide much-needed funding for research and offer a lifeline to families facing unimaginable challenges. Let's unite for this cause and pave the way for a future where no child has to endure the hardships of IRF2BPL.

As we embark on this journey, we invite you to stand with us, united in our commitment to advocacy, awareness, and action. Together, we can make a meaningful difference in the lives of those impacted by rare neurodevelopmental disorders.

For more information about IRF2BPL and other rare disorders, please see the links below or follow Einstein For The Kids and Yellow For Yiannis on instagram.

IRF2BPL Yellow for Yiannis Organization

Yellow For Yiannis Instagram

Einstein For The Kids Instagram

einsteinforthekids@gmail.com

Sincerely,

Einstein for the Kids & The Yellow For Yiannis Team - Together, let's create a brighter future for all.

Dine for Discovery: An IRF2BPL Research Fundraiser

By Yellow for Yiannis IRF2BPL Foundation!

Dine for Discovery: An IRF2BPL Research Fundraiser