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My name is Max and I am seven years old, soon to be eight. My fight for 21st Century Cures started when I was five. But I guess it started sooner than that, on the day I was born with a rare disease – a RASopathy called Noonan Syndrome. Noonan Syndrome is a genetic syndrome that affects cell growth and cell development. For me it means I have to visit a lot of doctors and have a lot of tests and procedures.
Rare is not as rare as you think. There are over 7,000 rare diseases in the world. 95% of them don’t have treatments. Treatments can take over 15-20 years to develop and cost billions of dollars! I don’t have that kind of money in my big blue piggy bank. I only have about one hundred dollars. I don’t think that will get 21st Century Cures very far. That is why I am asking for the government’s help to pass 21st Century Cures.
21st Century Cures is legislation to help all those that are sick, not just those with rare diseases. For me it means less surgeries and maybe not having to get a shot every night and maybe being able to just take a pill instead. It will help everyone because we will all be sick someday. We need to smack down and take down the horrible diseases. Doctors will find a way to fix them with the government’s help. We all deserve treatments and cures. This is why I have helped advocate for 21st Century Cures from the beginning.
I have drawn pictures in support of 21st Century Cures. I have met with Members of the House of Representatives and attended the Committee vote (which passed unanimously – everyone said AYE!) and the House Vote (which passed 344-77). Those were really big wins!
I have made over 100 support #CuresNOW pictures for each Senate office and hand delivered them to over 80 offices. (My legs got too sleepy to hand deliver them all.) I have helped make videos to help encourage and motivate the Senate to help pass 21st Century Cures. Even with all of this work and the work of many others, 21st Century Cures is still not a law.
This is why I need your help. My birthday is December 12th. My birthday wish is that 21st Century Cures will pass and become a law. Please help pass #CuresNOW by supporting the bill. Draw pictures yourself and talk to everyone you know about it. Vote YES for 21st Century Cures! The 21st Century Cures bill will help a lot of people and save a lot of kids in the hospital. Please help develop new treatments and cures! Time is running out. Please, before it is too late.
Love your friend,
Max
Note: One of 21st Century Cures’ most vocal advocates, Max heard that his mom was writing a blog post about the cause and told her that he wanted to write something, too. The above piece is his first person account, with the help of his proud mom.