Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Slim's Journey of Hope

It was June 2011 when our family learned of Friedreich's ataxia. We were not fortunate enough to learn of the disease through an article, a blog, or an event. We learned the hard way, with a neurologist giving us the name as the diagnosis for our 16 year old son. On that day, it felt as if we hit a brick wall going 60 miles per hour. We are the parents. We are supposed to fix everything and make everything better. But the hurdle in front of us seemed impossible. If life could be compared to a boxing match, I felt like we were down for the count.

Thankfully, with the love and grace from God, He empowered us with renewed strength. We pulled ourselves together and stood back up. We were not going to give up. We were going to keep fighting anyway we could. With no treatments and no cure, we felt helpless. And that is when we realized doing nothing was not going to be an option. We wanted to find an avenue to educate others about FA while raising funds for FARA.

Slim's Journey is a 5k run/2.5k walk held in Warrenton, Missouri. My younger sister, Jodi, came to me with the idea in the spring of 2012 of having a 5k. The idea was overwhelming in some ways because we had less than 1 year under our belt after learning of FA. I half heartedly agreed and the plans started. After praying about the event and what it would "look" like, we came to the wonderful conclusion that we could have an event to raise awareness, raise money for FARA, and glorify God at the same time.

The first year of our event, we set what we felt were lofty goals of raising $5,000 for FARA. (Warrenton, MO is a rural area after all). But the best part about having God on your board is His ideas are always bigger than yours. And He doesn't necessarily let you in on that little secret! Our "lofty" goal was quadrupled that year, as we raised $22,000 for FARA. Then in 2013, we raised another $25,000. On September 27, 2014, in the little town of Warrenton, we brought our 3 year fundraising total to $68,000. We are so thankful for those that sponsor our event, volunteer for our event, participate in our event, and donate to FARA through our event. Absolutely none of this is possible without them. They are my heroes. The odds of this disease affecting someone in their family are very slim. But they are standing beside us and the other FAmilies that participate in our event. That is a powerful statement.

This event has been so much more than FA and FARA. Putting this event together with my family has allowed me to move through my grieving process and strengthen my relationship with God. I absolutely want there to be a cure for FA but more importantly, I want others to know nothing is impossible when God is in it. Slim's Journey is our Journey of Hope.

Without the following sponsors, this event would never have gotten off the ground:

Finish Line Sponsor: Toyota Bodine

Registration Sponsors: Manor Roofing The McDonough Law Firm

Gold Sponsors: O'Fallon Veterinary Clinic Tri-County Agency Eagle Activewear, who designed and printed all of our shirts! Designs by Wendee, who designed and acquired all of our banners Norton Staffing

Silver Sponsors: Lincoln County Medical Center Peoples Bank & Trust Co Kelly Hill and Nicole Hardey with K Flynn Insurance CoventryOne Gastof Chevrolet Missouri State Troopers Association Dr. Mary Berk-Mooney DDS Warrenton Veterinary Clinic ADI Photogrpahy, who provided our fantastic music and photos Maryland Heights Police Officers Association J4 Door College United Methodist Church, who graciously provided the venue, love, and support!

Mile Marker Sponsors: Ted, Michele, and Carson Wood Cobblestone Contracting Corp Brian & Jenn Staley and family

Bronze Sponsors: Martin Funeral Home Mennemeyer Orthodontics Warrenton Golf Course Jonesburg State Bank Gymnet Sport, who has donated the medals every year for our event

A special thanks to: Grey Eagle for donating the water for the participants. Jill Crump with Jill Crump Photography for taking all of our action photos. Nicole Hardey for the singing of the National Anthem. Police Departments of City of Warrenton and City of Truesdale along with Warren County Ambulance District for helping us have a safe event. Warrenton Fire Protection District for the wonderful display of the American flag.

imageFAmilies in attendence for our 3rd annual Slim's Journey: Devine family Henry family Maher family Millering family Myers family Sponsel family Trentham family Tyler family

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.

 

More articles from this author

SHARE

FacebookTwitterLinkedinShare on Google+
michelle-h.jpg

 

Archived in
  the Ambassador Blog