Rare Disease Report

Meet Max Schill Rare Diseases' Greatest Advocate

APRIL 13, 2016
James Radke, PhD
Max Schill is a rare disease advocate. In fact, he is one of the best advocates we have in the rare disease community. From shaving his head for pediatric cancer, to hobnobbing with political leaders in Washington and cheering his mother in the Million Dollar Bike Ride—Max does it all with a smile and grace that is an inspiration.  And he tries to do it all before supper so that he has time to do his homework.

This week, Max was in Washington DC to lobby for the OPEN ACT. His goal was to visit all 100 Senate offices to explain the importance of the OPEN ACT and how it has the potential to transform people’s lives.  At each office, he provided them with a gift of his home made poster to promote Cure the Process.
Luckily, Max took time out from his busy schedule to talk to us about his rare disease, the OPEN Act and Senator Toomey’s amazing office.

Rare Disease Report: What rare disease do you have?

Max Schill: I have a RASopathy called Noonan Syndrome.

How many politicians have you met this past year talking about 21st Century Cures Act and the OPEN ACT?

A gigantic amount.

Why did you want to visit all 100 Senate offices?

Because I would like to give 100 pictures to all the Senators to ask them to make the Cures and OPEN bills into a law.

How long did it take you to make 100 posters?

A bunch of weeks.

Why is that important to you?

Because I have a rare disease and I want other people to get new medicines. Maybe I won’t have to get a shot every night maybe one day I could take a pill instead.

How many senate offices did you visit this week?

My goal was 100. I only did 83 because my legs got tired. A friend is going to do the other 17. I wanted to finish but my mom is making me go back to school.

How many Senators have signed on to support the OPEN ACT thanks to your efforts?

One, Senator Menendez but I think the others I met with will agree to help us too.

Why do you think the others Senators will help you too?

Because it is important to support rare diseases. Maybe they will notice that one day.

Which Senator had the best office? (and what made it so awesome)

Senator Toomey’s office because it was filled with candy!! They had Twizzlers, Mike and Ikes, gum, and lots of chocolate. They let me take as much as I wanted!! He has a table on the Senate floor filled with candy!!

Who’s your biggest fan – Fred Upton, Leonard Lance, or Jonny Miller?

They are all fantastic because they all support rare diseases.

Have any of the politicians say they are going to shave their head like you did?


If you had a bucket list with three things that you want to do, what would be on that list?

  1. I want to move to Texas because my Sukie’s (grandmother’s) house is really nice.
  2. I would like to plant roses. They are pretty.
  3. I want to be a scientist, movie maker, or toy maker.

The Orphan Product Extensions Now Accelerating Cures and Treatments Act amends the Federal Food, Drug, and Cosmetic Act to require the Department of Health and Human Services (HHS) to extend by 6 months the exclusivity period for a drug or biological product approved by the Food and Drug Administration (FDA) when the product is additionally approved to prevent, diagnose, or treat a new indication that is a rare disease or condition (also known as an “orphan disease”).
To ask your legislator to co-sponsor the OPEN Act, click here.



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