Milestones for Maxwell Golf Tournament
Save Children from a Rare Disease - Every Dollar will Go Toward Giving Children a Chance at Life
Date: August 17th 2020
Location: Fossil Trace Golf Club
Golf Tournament <<REGISTER>> Deadline: August 12th
We also need volunteers and auction items.
Social Media Handles:
Hashtags: #MilestonesForMaxwell, #HomeCutsForACure, #MulletsForMaxwell
Who is Maxwell Freed? Maxwell is an adorable 3 year-old boy with a twin sister named Riley James. Maxwell was diagnosed with a rare, terrible disease called SLC6A1 and his family is racing to develop a treatment.
What is the Disease? SLC6A1 is a rare neurological disease. It is too rare to have a name, so it’s known by its genetic location. The disease causes a movement disorder (like Parkinsons, speech apraxia, intellectual disability and progresses into a debilitating form of epilepsy.
· Why Help? A cure exists – we just need money. This disease can be cured via gene replacement therapy at a cost of $7m.
What is Gene Therapy? Gene therapy replaces the faulty gene in the brain. A good copy of the gene is inserted into a virus that doesn’t make humans sick. The virus is delivered via a spinal tap and attacks the bad copies of the gene by replacing them with good copies. Like a vaccine, this procedure is permanent and it’s a once and done solution. Gene therapy is already in use to cure spinal muscular atrophy, hemophilia and some forms of blindness.
Why is it so Expensive? Like any new technology, the costs are astronomical today but will decline over time. Rare diseases are deemed Too Rare To Care by scientists, the NIH and biotech communities. Patient organizations must foot the bill.
Help a Greater Good! The gene SLC6A1 is the 10th cause of autism, 6th cause of epilepsy and plays a major role in many psychiatric disorders. This research will impact a multitude. · How to Donate/More Information? The website is www.MilestonesForMaxwell.org.
Where will the Proceeds Go? Every dollar raised will go straight toward curing SLC6A1 via gene replacement.
Are Donations Tax-Deductible? Yes! Your donations are fully tax deductible as we are a 501c3. Our EIN is 83-1415567. Every dollar raised goes straight toward research. The non-profit is run by mothers that work night and day to help their children.