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FARAFARA Cure FA

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! 

When we left Vermont it was 86 degrees out, but due to Tropical Storm Harvey, it was a very windy and chilly 65 degrees when we arrived in Rhode Island! We still enjoyed our family time that evening, and made so many memories. The kids LOVED staying in a hotel!

RMG17 2We all had such a great time at this fabulous event! From the moment we arrive, we were surrounded by our FAmily, and a big community of smiling faces that came out for the cause. At the registration table, we were greeted with a warm hug from Felicia Derosa representing FARA. After registering we continued our hugs and greetings, seeing old friends and meeting new ones. I was honored to meet the Walker Darrow Family. Drew Walker attended in support of his niece Kate, and her parents (his sister and her husband), Rachel and Jason Walker. I met and became fast-friends with the Walkers at FARA’s Patient Panel with the FDA in June. Drew told me later that his favorite part of the event was “the sense of community and purpose.”

We had the privilege of hearing some great speakers welcoming us to the race, and thanking us for coming out. Kara Eichelkraut, from Reata Pharmaceuticals, lead the speeches conveying gratitude, hope, and excitement on research advancement. Alex Fielding, Jean Terry Walsh, and Christina Logan were each FA patient speakers. Each offered their own perspectives and gratitude, and I was so thankful to each one. Looking around the audience as they were speaking, I could see and feel the love, hope, and inspiration. I was proud to be there with my husband and children, holding them tight. I feel it is so important for them to be around our FA community, our Family. They can see, hear, and feel so many forms of hope, strength, and love.

The final speaker was Frank Sanchez, the President of Rhode Island College. He was very gracious in welcoming us and for his institution to have the pleasure of hosting this event. Following this last speaker was Marissa Beatini, who is a very dear friend of the Dilorio Family (who co-sponsor the event). Marissa sang for us the National Anthem. She absolutely took my breath away with her beautiful performance. I felt truly honored to hear her voice singing this patriotic song of triumph. I absolutely loved that my 7 year old was as touched as I was, seeing a tear rolling down his cheek.

After the National Anthem was finished, the crowd rushed to take their places at the starting line. My 7 year old son, surrounded in a sea of adults, wanted to run in this 5K. With the help of Mike Crawley (Matt’s best friend), we paired him up with a racing buddy named Derek. I watched with pride as my little boy lined up with these men and women at the starting line. My 5 year old and I wished him luck, told him to have fun, and that we would see him at the finish line! After wheeling through the crowd past the rows of runners, we navigated toward the back of the group of walkers. I can only imagine all of the thoughts my 5 year old was having, from his seated view-point on my lap.

RMG17 3Rolling through the race was wonderful. My husband Kevin pushed me, and I wrapped my arms around our little boy. As we rolled through the start line, it was wonderful to smile and wave to all those we passed by, and reflect on our already wonderful day. We got to visit with our dear friends; Christina Logan and her amazing parents Todd and Roseann. They were the first FAmily that we met through FARA, and we haven’t left their warm embrace sense.

When we got to the finish line, my son Elijah was waiting with a smile (and sore legs!). He was so proud to tell us that he finished the run in 26:30. I’m not a runner, so it doesn’t mean much to me, but I thought that sounded SO fast, and my eyes welled up (again!) with pride and joy. Of course, even if he fished last, I would still have my eyes well up with pride. It’s what Mom’s do! Before we left the Race, Sallyann (Matt’s Mom) give him a big congratulatory hug.

After the race, there was a BBQ and Raffle at the Portuguese American Athletic and Social Club. At this wonderful social-afterparty, there was great live music, BBQ lunch, games, and a great raffle!! In a recent conversation with Mike Crawley about the event, he told me that the fundraising total with all of their events so far this year is $105,000; the Race represents about $60,000 of the total. He went on to say, “We are proud to represent FARA’s incredible grassroots community with the 8th Annual Race for Matt and Grace FARA 5K. We are humbled by the love and support from the hundreds of our loyal FAmily and friends who attended and contributed to the event’s success all to help FARA continue to move research forward to slow, stop, reverse and cure FA!”.

Thank you so much Matt and Grace, the Diorio family, Mike Crawley and the Matt and Grace Fundraising Committee for another AMAZING event!

*I want to say a special thank-you to Mike Crawley, Marissa Beatini, and Alex Fielding, and Drew Walker for their help in writing this.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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