To: President Donald Trump and Governor Ned Lamont

Lack of Awareness and Funding Going Toward Sickle Cell Disease

Sickle Cell affects millions around the globe and nearly 100,000 Americans. It is the most common genetic disorder in the United States. Sickle Cell is a genetic disorder that affects the red blood cells and makes them contort into a sickle shape. Yet it is one of the most underfunded diseases in the United States. We must do something to change this.

Why is this important?

I am starting this petition in hopes to spread awareness about Sickle Cell and how it is underfunded. Sickle Cell deserves more attention and I feel that a petition has a wide outreach, gaining awareness and starting a conversation for change is my ultimate goal. Some of the symptoms for Sickle Cell are pain in the limbs, strokes, excessive fatigue, and a weakened immune system. All of those symptoms cause for the life expectancy for a person with Sickle Cell to be under 50 years old. Some people are still simply unaware that they carry the Sickle Cell Disease trait. This must change, and I feel funding and awareness are some of the main ways to combat this disease. I can not do this alone and that is why I am asking for as many signatures I can get.

Cystic Fibrosis is a disease very similar to SIckle Cell. 30,000 people suffer from Cystic Fibrosis in the United States and 70,000 Worldwide. In 2015 the NIH reported that Cystic Fibrosis made $80 million meanwhile Sickle Cell made $75 million. Sickle Cell affects more than double the amount of people Cystic Fibrosis does. Even though Sickle Cell is more common the funding and research numbers would not show that.

I am an 18 year old Senior at New Haven Academy and am living with Sickle Cell disease; I know first hand the toll it can have on someone and their family. Funding for Sickle Cell can go toward screening for the Sickle Cell trait, more research, and better inpatient and outpatient care. Those are just some of the many things funding for Sickle Cell can do.

I personally thank everyone who even takes the time to read this because you too are making a case for change. This petition is not just for me, it is for the hundreds and thousands of patients battling this chronic illness everyday.