Rain Won’t Stop Us from Curing FA!

Rain Won’t Stop Us from Curing FA!
This post was originally published on this site

Guide to Life with FA

After months of planning and executing, my family’s grassroots event, the 7th Annual Mother’s Day 5K Race for Christina, took place last Sunday, May 12.

Two months ago, I wrote the column, “How to Plan a Grassroots FA Event,” which includes our planning checklist. My family and I begin preparing four months before the race. Since the event is always on Mother’s Day, we start on our checklist in January.

Everything went according to plan based on our timeline. We felt very much in control of how our follow-ups and communications were taking place. However, there was one thing that was not under our control: Mother Nature.

Checking the weather app on our phones became a daily habit for my family and me the week of the event. The forecasts were not looking promising, calling for cold, rainy, and windy weather on Mother’s Day. Still, we weren’t going to let this bring us down and get in the way of raising awareness and funds for Friedreich’s ataxia!

My sister, Catherine, who is mostly in charge of the race, got in contact with the grassroots coordinator of the Friedreich’s Ataxia Research Alliance (FARA) a few days before the event to discuss different options for accommodating the weather. The two representatives from FARA who would be present on the day of the event said they would bring tents to set up over our volunteers who were working registration. We also worked with the coordinator to alert registrants that the event would still occur, rain or shine.

By Friday, May 10, we had tallied 94 registrants for the race. Registration on the event website was closed two days prior to the race so that we could submit final numbers to FARA and to a local running company that was in charge of supplying the bibs and the timer machine. Walk-up registration would be available to anyone who decided to run or walk at the last minute.

My family and I were uncertain about the number of people who would still attend due to the weather. We didn’t know how many would stay away, figuring their registration fee would just act as a donation to the cause. We would rather have had the support of their presence, because it is so much more meaningful.

Out of all our family and friends who were preregistered, more than half (50-plus people) showed up, even in the pouring rain! My heart was so full. I truly have amazing people in my life! The endless love and support are what I think about whenever I am having a tough day due to living with this rare disease.

I believe this group of people made the effort because they know how important the cause is. They know it is important to raise awareness and to educate the general public and potential donors and sponsors about how the donations will be used, which is for research and making future grassroots events possible.

My mother and me at another successful Annual 5K Mother’s Day Race for Christina. (Courtesy of Christina Cordaro)

Our family event brings people close to us from all over. For example, my dear friend Mary, who lives in Vermont, made a special trip to be there. She made a weekend out of it and traveled with her two sons and her uncle. This was her third consecutive year attending; she said it is now her yearly Mother’s Day gift and tradition. Mary also lives with Friedreich’s ataxia.

Each year, before the race begins, I like to give a speech to thank everyone for being there, discuss any updates on research and trials, and explain what the money raised will go toward. This year, I dedicated my speech to Mary. I expressed how she is my role model by being a wonderful mother to her children.

Mary is so positive and does not let Friedreich’s ataxia stop her from being the perfect example to her beautiful kids. When she is not participating in clinical trials, hosting her grassroots event, Beads for Hope, or raising awareness in Vermont’s state capital, she is living her dream of being a mom. I hope I can be as good as a mother as Mary is someday. Her children adore her, and that is exactly what I want.

Grassroots events are creating opportunities for research and clinical trials, which could potentially lead to more effective treatments or a cure for Friedriech’s ataxia. if Justin and I become parents someday, this paints a positive picture for our future family.

So, thank you to everyone who registered for and/or donated to the 7th Annual 5K Race for Christina. We raised awareness and over $10,000 for Friedreich’s ataxia research. That brings us to a total of $91,000 over seven years! Together, we will cure FA.

***

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

The post Rain Won’t Stop Us from Curing FA! appeared first on Friedreich’s Ataxia News.

Chris Comish serves as the Publisher of the website, and is responsible for directing the editorial focus as well as putting the finishing touches on many featured articles.