Rare Disease Day 2023

Today is the day!! Today, February 28th is Rare Disease Day!! And you, my friend, are among the first to know my secret. I have kept this from everyone, even my husband who knows all that I do. Over the last several weeks I have prayed about the next steps of my rare disease advocacy journey. I have talked with people about how to proceed. I always have lots to say and I feel that what I have to say about rare diseases is worth sharing so, for the last several days I have begun preparing my blog. The name of it is Advocate Like a Rare Mother and can be found at www.advocatelikeararemother.com. My hope is to share more than I share on social media here. I want to share with those who really want to hear it. I hope those who find my information valuable will share it with others and that this will provide a way for those with rare diseases, and those who care about them to get information, resources and connect with each other. This will be a work in progress, but for the first time in my life, I can commit to doing this and I do (there it is in writing).

What does a rare disease advocate do on Rare Disease Day? Well, other than starting a blog....I can tell you that the work for Rare Disease Day starts long before February 28th! Like any event the preparation is long and begins soon after one Rare Disease Day ends. For me though this year was a real whirlwind, as my family relocated from being life long Wisconsin residents and moved to Knoxville, TN. We moved for a variety of reasons, but as I look outside at my peach tree blossoming in sunny 70 degree weather while the calendar still reads February, I would be lying if I said the weather did not play at least a tiny role in that decision. But I digress, my preparation for Rare Disease Day pretty much started as soon as I had an address for where I was moving. I immediately wrote letters to my new legislators. While I knew little about them, I strongly believe that building a relationship with those we entrust with making decisions on our behalf is important (regardless of ours and their political stances). Since then I have been the boots on the ground - reaching out to local resources and helping NORD create a database for the state of Tennessee so that we would have those available for those in need of resources. This is an overwhelming task for anyone, but for someone who had never been to Knoxville until we closed on our house (call it a mid-life crisis)- I was really starting at ground zero. I then reached out to local news stations with press releases on what I wanted to do and secured a room at the local library to hold my event.

I would love to say my event was a rousing success with organizations coming around to support me and those with rare diseases, when I held it last Saturday.....but my event was just me. But like I mentioned above, this girl can talk, and use my words I did. I connected with those who came. It was touted as a resource fair - and while I did not have resources there to make themselves available other than me, I focused on the people who were there - what resources they have available to them and what they would like to see in the state of Tennessee. I told then about the State Report Card that NORD puts out for each state (https://rarediseases.org/driving-policy/nord-state-report-card/) and how Tennessee, like every other state has good and bad, and that I want to hear it all, what is working and what is not. I want to build on the good and really get to work on what is not and understand it and see how I can work with them, other organizations and legislators to help make changes happen. I want people with rare diseases and their caregivers to feel part of this and had opportunities for them to sign up to be part of helping me do this moving forward.

So, that was three days before Rare Disease Day. Sunday I spent a day relaxing and focusing on what I wanted my next steps to be with this, with the two disease groups I volunteer with and with the Rare Action Network in Tennessee (https://rareaction.org/resources-for-advocates/state-profiles/tennessee/). Sometimes the most is done on the day when little can be seen on paper, my friends. Yesterday I logged on to the FDA Rare Disease Day 2023 from 9am-4:45pm. I was greatly encouraged to hear discussion on involving pediatrics and minorities in research and even talk about mental health being looked at seriously when discussing rare disease patients (something that I am passionate about). As I type now I am listen to Rare Disease Day at NIH.

I believe that information is power. I believe that I am blessed to have the circumstances where I am able to take my volunteering on as a job. I do what I do because I want to gain as much knowledge as I can, share it with people who cannot spend hours listening to webinars, may not have the ability to understand some of this (granted some of the science is way beyond me - especially genetics), or may not know how to get this information.

I will wear my zebra stripes today, as will many others affected directly by rare diseases. There are events all over the world to educate and bring awareness to rare diseases. Buildings and structures will be lit in rare disease colors in support of those worldwide living with rare diseases. I know that every one in the rare disease community around the world appreciates the efforts of everyone today. I also know that what we all really want is for people to remember those with rare diseases every day of the year, not just the last day of February - it is a central part of most of our lives, day in and day out. The recognition by more in the medical field can help with earlier diagnostics and more treatments, more awareness in our communities can help with general compassion and understanding for the battles (many unseen) that those with rare diseases fight every day. Thanks for being here, for reading and please do share.