Advocating to win the fight

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My name is Noah Victoria I am 19 years old I was diagnosed with Abetalipoproteinemia, which is a rare metabolic disorder. This was my second year participating in Running for Rare Diseases as a patient partner. I must start off thanking my mom for showing me this wonderful program. Running for Rare means so much to me because they raise money for the undiagnosed families, which I feel close to because ,I am currently under the undiagnosed program at NIH due to other ongoing health issues. I wanted to post this blog sooner but the entire summer I have been in and out of the hospital in hopes to find some treatment for the debilitating symptoms that I am experiencing.

 

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Running for Rare has brought me out of my shell; I am usually a shy person when it comes to meeting new people. Everyone was so loving and welcoming. My shyness lasted only a short amount of time. This means a lot to me. It is a blessing to know that they are people that care enough to give awareness to help those that suffer with rare diseases. Running for rare has brought me to other places that I would have been to scare to go, which is advocating for myself. It took me to Rare Disease day at NIH. This was my second year representing Running for Rare on Rare Disease day. My parents and I had a table on RDD at NIH. I first want to thank those who sent me pictures for the poster that we did I really appreciate your help. My mom and I also made bracelets with the logo colors, which was a huge hit. I was so proud of how everyone stopped by our table and wanted to learn about Running for Rare. Here are some pictures of RDD at NIH this year.

I was so blessed to actually meet my running partner Laura at RDD. She actually had a table across from us. The best part about this partnership is that she only lives a couple hours away and that gives us an opportunity to really get to know each other. I believe this is a life long friendship that if it wasn’t for Running for Rare I would have not had the chance to have her in my life. We met a very inspiring person Jennifer. She was at the table next to us. We had a chance to talk about Running for Rare and found out that she was involved and her running partner was Laura’s sister. I call these God moments! We asked her if she was going to Providence, but she was not sure how she was going to get there. Its not just about running, it is also about bringing people together. Giving me a chance to be the advocate that I so longed to be. It has been difficult because my rare disorder does not have any organization or foundation that I am a part of. This has been life changing for both my family and me.

We decide to ask Jennifer if she wanted to come with us to Providence. We were so happy to hear that she was coming with us. This trip gave us an opportunity to share rare stories and it just felt right. We drove up on Saturday and met with Laura and her sister Rachel. We had a wonderful dinner together. The day of the race we got up early to see the runners before the race. Then went to the park to cheer them on. We were not prepared for the cold weather, but it was worth every minute. I cannot explain to you the feeling it is to see someone running for you. After the race we meet again and had our chances to say goodbye. Laura pulled out from her pocket the medal she was given for completing the race and she gave it to me. True meaning of partnership. I cannot say enough about how blessed I am and that I have been given the chance to be a part of this.

I now have another running partner that is participating in the New York Marathon and her name is Kristin. She also has a Rare Disease. We have had a chance to talk and hopefully meet soon. She has helped me connect with others my age that have a rare diseases. You see again Running for Rare is not just someone running for you it is a true connection. I encourage anyone to please join us to win the fight, WE ARE ALL IN THIS TOGETHER!!!

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One comment on “Advocating to win the fight
  1. Anne Burtenshaw says:

    Great blog. Hope to see you in NYC Noah.

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