A Letter to Council - Asking for Local Recognition

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 Next Month (May) is Huntington's Disease Awareness Month. One of the ways I was going to try to bring awareness to Huntington's is writing a letter to my local municipal council. Below is what I wrote to the Municipal Council for the Municipality of South Dundas.

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Members of Council,

My name is Christian Mueller and I am writing to you today to ask that South Dundas Council formally recognizes May as Huntington's Disease Awareness Month. Huntington's Disease is a rare brain disorder that affects many families both in Canada and worldwide. In this email I'll give a short run down on Huntington's Disease and the impact has.

Huntington's Disease, often called HD, is a rare brain disorder that has symptoms that are equivalent to having Alzheimer's, Parkinson's, ALS, and Schizophrenia all at the same time. As well, Huntington's is genetic. It is caused by a genetic mutation, and those that have the genetic mutation have a 50 - 50 chance of passing the mutation down to biological children. Huntington's is also terminal, there is no cure. Any treatment that is given is only for symptom management.

When I was around two to three years old, my mother was officially diagnosed with Huntington's. That means for most of my childhood, I witnessed first hand how horrific Huntington's is. By the time I was eight years old, my mom moved into a local long-term care home. In January and February 2021, my mom declined further ending up at Brockville General Hospital eventually ending up i as a patient on the Palliative Care Unit. On February 19th, 2021, my mom passed away. My mom's father had Huntington's as well and passed in 1997. A few years before my mom's passing, her sister was diagnosed as well.

In late 2021, I decided to ask to be sent to the genetics at CHEO for genetic counselling, the first step to be tested. I had my blood drawn and sent off to Toronto. On May 4th (funnily enough, during the first week of international Huntington's Disease Awareness Month), I received my test result - positive - I will develop symptoms at some point.

I decided to use my experiences to advocate and spread the world about Huntington's. I currently have a blog, HD - It's Not High Def Anymore, where I write about my various experiences with Huntington's. The blog site is nothighdef.blogspot.com and goes a little bit more in depth. I invite you to read it if you have time.

I think that South Dundas Council officially recognizing May as Huntington's Disease awareness month is the next step in raising awareness. It would show that in our area, it's recognized how horrific of a disease it is and spread awareness on a larger scale.

Yours Truly,

Christian Mueller, (R)PSW

Comments

  1. KellyApril 17, 2025 at 6:00 AM

    Christian you are an amazing young Man! Your Mother was always proud of you...she would even be prouder. Love you, we are so proud of you. ❤️

    ReplyDelete

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