One of the greatest things we are able to do with out platforms is use them for the greater good for a lot of different organizations as well as people. Well, they really are one in the same because after all, and organization is only as strong as the people who form it, right? Today, we're going a little bit further than our normal reach of Muskegon and the surrounding West Michigan area and we're doing so in the hopes that we are able to raise a little awareness for a fairly new national organization, with some pretty close heart strings.
13 Years ago, it seemed that the stork was paying Mrs. O and I a visit more often than not. All of our "grandrunts" as I like to call them , were being born every time you turned around it would seem and the blessings and fun began! We've been so very fortunate with all of them to see their unique and remarkable emergence as they are now pre-teens....or...yes...even teenagers some of them now. Like any kid, you accept them as they are, but when little benchmarks get missed....questions start to pop up and that was the case with Elise. Elise is now 13 years old, and doing just fine, but....some of the struggles she and her mom and dad faced were not readily defined....there wasn't a whole lot of knowledge about "why" she missed a few things and there wasn't a whole lof of peer to peer support for other parents. Elise was born with Ataxia. "Ataxia is a term for a group of disorders that affect co-ordination, balance and speech. Any part of the body can be affected, but people with ataxia often have difficulties with: balance and walking. speaking. swallowing."
Ataxia falls under a genetic condition called CACNA1A - " The CACNA1A gene belongs to a family of genes that provide instructions for making calcium channels. These channels, which transport positively charged calcium atoms (calcium ions) across cell membranes, play a key role in a cell's ability to generate and transmit electrical signals". Yes, I needed to make some quotes here, as most of this stuff is well past my grade level and you all know that if you've followed my career long enough. I am however very capable of learning, growing and following through with those smarter than me to help them get the word out. With Elise turning 13 and the CACNA1A Foundation coming together only 3 years ago....it's been 10 years of me waiting to find a way to pitch in.
Sunitha Malepati is the Vice President of the CACAN1A Foundation. Like any organization founded by "mom power", let me tell you that they are small but mighty in their beginnings and they have also identified and gotten the ball rolling on an entire area that had not had much focus on it until they decided it was time. They work tirelessly on behalf of their kids and other affected families of this to not only generate some finding for their work and research, but to also identify others who may have kids that how similar symptoms, but have yet to get a proper diagnosis because it is such a fairly rare condition.
We would love to be the kind of outfit that can write a big check to help, but...we're still at the stage where our utilization of time and talent comes before treasure, so Sunitha was kind enough to spend a few minutes talking with us and the experience she's found with her daughter and how her team of mom's came together to get this organization started and how you can help, or learn more. Take a listen.
On our end, we're committed to helping the CACNA1A Foundation with their needs how we can. Messaging, advertising, advocacy, a water bottle and t-shirt. Hey, every little bit helps. If this is an organization that's spoken to you in someway...get involved. Make a donation. Learn more about CACNA1A and if you know of someone struggling to find answers about their child, send them this. The power that comes from the idea of saying "Yes, I can" is amazing and all of the biggest groups in the fight against anything from cancer to any other disease all began with grass roots. CACNA1A is a pretty complicated and baffling condition and the road ahead is long. We're honored to have helped share the word and plan to continue to do just that.