To Change Lives For The Better

Why Advocate for rare diseases? This past week I was asked this very question, by a man who was waiting for a diagnosis. I had never been asked this question before. It made me think...why do I advocate? I don't advocate because I was told to, I advocate because I want to be the change.  When I was thinking about it I looked back on the last couple of days.  I had been on Capitol Hill in Washington D.C. meeting with staff of my senators and representatives in their offices.  I came to D.C. with a purpose.  I wanted to make a change. I might be one out of 20 people they meet with in a day, but I wanted to be the story that they remembered at the end of the day.  Living with a rare disease that currently has no cure is hard.  When their is nothing else you can do, advocate for what you do know.  I know that I can try to make a change for people who have no diagnosis.   This week I advocated for The Genomic Answers for Children's Health Act (H.R. 7118).  This act gives people the chance to have early diagnosis.  If you don't have a early diagnosis you are lost.  You don't know where to go, the therapies available, surgeries you may need.  Without knowing there is no hope.  With rare disease, time is everything.  Sometimes it is even life and death. 

At the beginning of the week the Every Life Foundation helped prepare me for the meetings I was about to face.  They gave me tools to use my voice to impact others. At the conference they had us do this exercise to share your story in 6 words.  What I choose was; To Change Lives For The Better. You should try this exercise in what your story is.  A lot of people had great 6 word stories that would really leave a mark.  Legislative meetings are not long.  You have to fit your message into a small part, but leave impact.  It is defiantly a skill.  I am still learning, but at age 12 I know I will keep getting better.  I have learned that you are not talking extra fast to fit more words in.  You need to make your story simple no matter how complex living with a rare disease can be.  Many of the people you are meeting with have not experienced rare disease.  You are unique. No one knows your story better than you do. My specialists and other advocates have taught me that even other people with rare diseases have not had the same experiences.  We are all unique and that is why we are zebras. One thing I know for sure is how getting my genomic answers when I was 4 impacted me, and I want to same possibility for others. I have learned that time is critical and we all need answers.  Just because we are rare, we still deserve the same answers and treatment as others.

 

This was not my first experience advocating.  I have had several experiences, but the others were virtual.  When I do it virtually  I feel like I make an impact but lacks the connection.  When I did it face to face with them I feel like they can see the effort it takes to get to their office and meet with them.  What I have heard a couple of times this week is that our stories are important. No matter if you have been doing it since you were young or if you have just started.  Your story makes an impact no matter who it is from.  At 12 years old with a rare disease that impacts every aspect of my life, I  have experienced a ton of life experience most have not. I may not understand everything their is to know about bills or taxes. I do understand that the bills that I advocate for may give people the chance to have something that everyone needs.  We all need answers and hope. 

I have worked really hard to get to D.C. to share my story in hopes of changing the lives of others.  Without opportunities like genomic testing and bills such as The Genomic Answers for Children's Health Act (H.R. 7118), I probably would not be here today to share my story.  I would like to say thank you to my family that has supported me and is always there for me.  My extended Cure CMD family, some of who were there advocating along side me this past week.  Rare disease is a bipartisan issue, it affects anyone and everyone. I have heard people say that they didn't know about rare diseases until they have it or someone they love does.  I had the opportunity to meet a ton of incredible people this last week. From individuals like me with CMD and other rare diseases, parents and caretakers of those with rare disease,  as well as people who put themselves into the rare disease community with the desire to help others. You may be an actor, a teacher, a legislator, or a 12 year old girl still learning her way, but we can all come together no matter our shapes and sizes to change lives for the better.