Give $5 to Wave Goodbye to INAD
Rowan has Infantile Neuroaxonal Dystrophy (INAD).
This devastating condition, described as Parkinson’s and Alzheimer’s Disease combined, affects infants and toddlers. It takes their lives as early as 5 years old. But gene therapy offers hope.
INAD will take 60% of Rowan’s skills within 40 months* of onset.
She is running
out of time.
When you donate to the INADCure Foundation’s WORKING ON A MIRACLE project, 100% of the donation** goes to their efforts to start clinical trials for children like Rowan.
*Per this study conducted in 2020.
**If you opt to cover the small fees associated with your donation (i.e., charged by Venmo, Paypal, etc.).
HELP FUND A MIRACLE
If the INADCure Foundation can reach their fundraising goal, they will still be 1 - 2 years away from starting a gene therapy clinical trial. Newly diagnosed children won’t survive delays. You can even credit your donation to the GIVE 5 CHALLENGE team.
GIVE 5 CHALLENGE
Inspired by the 2014 ALS Ice Bucket Challenge, Rowan’s family and friends banded together to create a massive awareness and fundraising campaign on social media. Join us starting March 22, 2024. We’ve put together tips to help you started.
ROWAN’S STORY
Rowan received her diagnosis on November 13, 2022; it was the day she turned 19 months old. We are just getting to know her. Now, INAD is going to take everything that makes her “Rowan” unless everyday people choose to save kids like her. You can make the choice to help.
Why Do INAD Kids Need YOU?
Most deep-pocket investors don’t want to help because there’s “no money to be made” by saving these kids. So it’s up to us: the regular people.
Give $5, or whatever you can.
Give once, or sign up for recurring donations.
Currently, around 150-250 kids on the planet have been diagnosed with INAD. Researchers believe the number is actually higher and expect to discover additional INAD patients due to advances in genetic testing.
The same gene (PLA2G6) affects older children with Atypical Neuroaxonal Dystrophy (ANAD) and adults with early-onset Parkinson’s Disease (PARK14). Gene therapy for INAD, in conjunction with other therapies and medications currently being studied, could lead to discoveries that save countless people.
Donation to the INADCure Foundation’s WORKING ON A MIRACLE project will help children like Rowan; but Rowan may never be chosen or eligible for a clinical trial, and INAD might take too much of her by the time a trial is available.
Nonetheless, we are fighting for her and for children like her.
Gene therapy is creating miracles for children with spinal muscular atrophy, metachromatic leukodystrophy, and other terminal genetic conditions. But these therapies are often given only to newly-diagnosed children—the ones who haven’t had their minds and bodies ruined by their diseases.
INADCure Foundation is seeking $5 million. Let’s put that into perspective:
Super Bowl 2023 ticket prices started just below $5,000 and went all the way up to around $36,000 for the most premium seats. For ONE person.
Americans spent $1.2 trillion in 2011 on nonessential goods (“including pleasure boats, jewelry, booze, gambling and candy”).
The total cost of Volkswagen’s Dieselgate scandal was roughly $25 billion.
Imagine if a fraction of those dollars were put toward ultra-rare diseases that rely on average people to fund their cures.