Hello ! Welcome to February!

I am posting this update about our work within the Foundation for Casey’s Cure to  keep you informed as we work toward growing our organization.

As you  may (or may not) know, when an organization undertakes medical research, it is required to create a scientific advisory board.  These esteemed members  from the neuromuscular community volunteer their time to meet with the researchers and The Foundation’s Board of Directors on a quarterly basis.  They’re tasked with monitoring the work the lab is doing, and whether the lab is keeping to the time table established in the initial work order.  They’re also tasked with providing feedback to the research team that may inform their work to the betterment of the outcome.

Currently, we have several meeting scheduled and I look forward to meeting with these neuromuscular translational scientists/researchers.  Since this is my first opportunity to participate in these meetings, I expect that I will learn a lot from them.

The Foundation is also working with another foundation to support the awareness of Rare Disease Month, which is every February.  Additionally, we want to bring awareness to Rare Disease Day, which, this year, is February 20, the rarest day of the year!  In non-leap years, it is celebrated on February 28th.

To support our awareness campaign, the City of LaGrange (GA) will be lighting up our fountain, that is the center of our town, each evening from February 23-February 29 in multi-colored display representative of the Rare Disease Community.  There are~10,000 rare diseases and many of them have outcomes that mimic other diseases.  However, each rare disease is distinct from the other, regardless of much they appear to be similar.

Unfortunately, I can’t seem to get the live feed of the fountain to embed here, so I will include this link that you may use to see the fountain and the lights during the designated evenings. (Please remember, the lights are only visible when it’s dark… I had to be reminded of this myself…)   http://www.lgtv.org/Home/Square (February 23-February 29, 2024.)

I will share more when I know more!  Thanks for your support.

Gratefully,

Chris  Duane, Casey’s mom…????