Happy Spring! All Things New - Rare Style

Wow!! It is already the first full day of spring 2023 - how does that happen faster and faster each year?? Spring brings with it things blooming and life in the rare disease world always seems to have new things on the horizon - spring of '23 is no different. I had someone ask me over the weekend what I do...always a hard question for me, as I have not worked full-time, outside the home since our oldest was 13 months old. I am a substitute teacher a couple days a week to get me our of the house, meet people and contribute a very little to our income. What I do, my passion is rare disease and here is what I have going on now....

I have shared on here the most immediate thing that I have on my agenda right now - We are 8 days away from our 3rd Adrenal Insufficiency United Conference! This organization supports patients and caregivers with all forms of adrenal insufficiency, which our youngest son has, and was my first connection with the rare disease world in 2015/2016. We change locations each time, hoping to make it easier for people in different parts of the country to attend and this year it is taking us to Portland, OR. Three days packed with connections and education that I know from previous experience cannot compare to anything else. Registration is still open and is free - https://united4rare.org/

I had a meeting last week virtually talking with other volunteers for the Association of Frontotemporal Degeneration - https://theaftd.org This is the organization that I recently became a volunteer ambassador for and supports patients and caregivers with frontotemporal dementia - which my dad and Bruce Willis have in common. I am sharing information that I find on this illness and work to bring awareness while I work to find the best way to give my time in this organization. They have a conference in May which conflicts with the event I am attending for the next organization on my list.

In 2021 I had my 15 minutes of fame, which will be in a future article and that added some pretty influential people to my contact list. While I had that momentum behind me I contacted the National Organization for Rare Disorders to see how I could best use it. I became state ambassador for their grassroots arm of the organization their Rare Action Network And today serve as Tennessee's Community Engagement Ambassador for RAN and will be attending their Living Rare Forum in Washington D.C. the first week in May. In addition to that role, I am also participating in their Policy and Advocacy Task Force to stay informed of what is occurring as much as to help. for more information on any of these endeavors within NORD, please visit https://rarediseases.org/.

And the last volunteer commitment for rare diseases that I have is with Patients Rising, another one where I feel I am working to gain my footing. Two years ago I finished their Advocacy Masterclass packed with tons of quality policy information for those working to make changes within the rare disease community. Since then I have not done a lot - BUT - they are currently starting the Patients Rising Now Senate later this month and I am excited to be a part of that and see where it goes. For more information on Patients Rising Now - please see https://patientsrisingnow.org/

I hoping that by stating this blog, I not only give you glimpses of life with rare disease, caregiving for those with rare disease, but also some of the many varied opportunities to help make change happen within rare disease.