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3rd Annual Costume for a Cure

CostumeforaCure2017The 3rd annual Costume for a Cure was held on November 4, 2017. Costume for a Cure is an annual fundraiser, hosted by me, Chelsea Conley, in St. Clairsville, Ohio (near WV and PA). It consists of Halloween Costumes, a DJ, dancing, dinner, and Chinese Auctions. This year there was also face painting and Jingles, the balloon artist. We also had a 50/50 this year. The winner received $300 and donated $100 back.

ALL proceeds go to FARA for research for a cure/treatment for Friedreich's Ataxia (FA). This year's theme was Hocus Pocus, so there were witch decorations and witch themed desserts. The dinner menu consisted of chicken, ham, hot dogs, stromboli, cheesy potatoes, green beans, and calico beans.

Everything was delicious and the night was very enjoyable. There were five people with FA present; Beth Hanes, Lilly Lucas, Drake Hampp, Ashlea Smith and myself. Ashlea gave an excellent speech about FA on behalf of the FARA Ambassadors.

Costume for a Cure raised almost $8,000 this year! 

A Weekend to Remember

PhillyWeekend17 1

Sitting at my computer desk back home in Louisiana, I am daunted trying to fit the profoundness of October 14-16, 2017, in a simple blog post. Know that the warm, homelike sense of togetherness was there, in much greater amount than this writing implies.

When it comes down to it, togetherness was the most impacting part of this weekend. FA is such a rare, such an unknown disease, that people with FA mostly feel doubly burdened: not only do we have to battle a progressive, debilitating disorder, but we have to explain the symptoms aggravatingly often to those unfamiliar with it. (If we had a dollar for every time someone thought an FA patient was drunk, we’d never need another research fundraiser.) But being in Philadelphia this weekend, among crowds of people familiar with FA, finding people willing and eager to help in all circumstances (I especially appreciated those who offered to push me in my wheelchair down the thick carpeted hall.) - well, that was indescribably comforting. 

The 8th Annual Race for Matt & Grace

RMG17 1On Saturday, September 23rd at Rhode Island College, my family was surrounded by the love and support of FAmily at the 8th Annual Race for Matt and Grace. There were about 300 participants, and about 100 more in attendance between vendors and volunteers. Our FA community is exceptional: we are truly in this journey together. We have a fierce determination to come together in love and support of each other, and to have a great time!

This was my second year coming to the race, and my husband Kevin and I decided to bring our two boys in Vermont with us this year (Elijah, 7; and Gabriel, 5), and make it a mini-vacation! The drive down was beautiful, to look out the car window we could see the colors of the leaves that were changing. Since we left on Friday, the boys were excited that they could miss school for this family trip. Along the way, we talked about the race, and why it is important to us, and our whole FAmily. They each talked about what it would be like if Mommy didn’t have to be in a wheelchair anymore. We imagined all the different things that I could do with them, and experience with them, and not just watch. We even talked about my being able to run with them someday! It was such a joy to share all our wishes and hopes! 

Union Jack's British Pub Party

UnionJackThe recent fundraiser at Union Jack’s British Pub was a great night! Of course, because of FA I could barely hear anything due to all the people there, but hey! that’s why we had this fundraiser… to cure FA and correct this hearing problem! Randy Sisulak is the organizer of all this and has been holding various fundraising events for FARA for the last several years. He is friends with Karen and Pat Keirnan, and their daughter Erin who has FA.  Aside from the Claxton Classic Golf Tournament, (which I also attended in July, and had a blast!), he has hosted events at various local restaurants to serve as meeting spots to gather FA friends and families, as well as his own circle of supporters who are devoted to funding research for FA. These events serve as a great way for local FA families to meet one another and reconnect. So huge props to Randy for a great fun night! 

The Ataxian Screening - Lee's Summit, MO

Ataxian MO 1A feeling anyone with Friedreich’s Ataxia, or a family member of someone diagnosed, knows too well, is isolation--the feeling of not knowing what to do next, where to turn for help or support. Dawn and Eric Graczyk have two of six children, Marissa (12) and Josiah (6), who were recently diagnosed with FA. Determined to make a difference, the Graczyk family has been gathering information and helping to spread awareness since the diagnosis of their children.

Prior to the screening, the family was able to show Kyle Bryant around during his visit. This meant sampling some famous K.C. barbeque, farm life and a tour of Whiteman Air Force Base, just to name a few.

On September 21, 2017, the Graczyk’s hosted a screening of “The Ataxian” at B&B Theatres in Lee’s Summit. In one place, in the middle of the country, people gathered to raise funds, learn and be encouraged and inspired by the film. Whether they had seen the film or not, everyone was there to learn more and show support to those with Friedreich’s Ataxia. Before the showing, Dawn expressed her appreciation for the support and explained how much hope the film had given her and her family. 

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