Our father was diagnosed with ALS 3 years ago and recently passed away on August 20th, 2022. He battled this disease until his very last breath. Recently, we were close to securing therapies that could have made a real difference for him. We planned to launch a GoFundMe to help pay for the medication, but his disease progressed too quickly over the past month.

Our goal is to help newly diagnosed patients by being the resource we wish we had when my father was first diagnosed.

What is ALS?

For those who don’t know what ALS is (aka Lou Gehrig’s Disease). It's a neurodegenerative disease where your brain’s motor neurons die at an accelerated rate. This means your brain can’t send messages to the rest of your body, leading to every muscle in your body deteriorating and becoming paralyzed until your heart stops beating. The average life expectancy is three years. Unfortunately, there is no cure for ALS today.

Okay, so how do you find a cure for an incurable disease?

Several drugs have proven to slow the progression of the disease for many patients, but the process of sourcing care and therapies to battle ALS is complex.

For my father, our process looked like this:

1. Established a support team (roles: physical, emotional, cure advocate)

2. Find the right solution-oriented doctors

3. Learn what is covered by insurance

4. Start a treatment plan with accessible medications to slow progression

5. Get medications globally through the Socialmedwork

6. Get genetic testing to identify gene variants

7. iPSC testing to rapidly test compounds for safety and efficacy

8. Based on the testing, if positive results, figure out how to secure medication

I will help newly-diagnosed patients navigate their own quest for a cure and help them avoid the pitfalls we faced with my father's case. The money raised will be used to bring on a part-time employee to provide patients with the following:

1. A personalized roadmap for how patients can best battle this disease.

2. Introductions to the same leading doctors, scientists, biotech companies, and other organizations that helped my father.

3. Provide guidance with sourcing medications and therapies available in the US and abroad.

4. Be a resource for any questions the patient and family have each step along the way.

We aim to raise $25K and help five patients for the first year of their battle against ALS. If we raise more, we will use these proceeds to help patients cover the cost of medications, doctor visits, testing therapies, etc.