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Beads for Hope Fundraiser

Beads for Hope

At the beginning of the year, FARA published a summary of grassroots fundraising throughout 2017; event names, funds raised, and location of the event held. I noticed that Vermont was not on this map. As an Ambassador, I knew that I was pretty active in creating and raising awareness, attending fundraising events, and being active in the FA community, but seeing this map really brought to my attention that I was not providing/creating a way to allow my local community the opportunity to be a part of the journey to a cure. I decided right then, that this year I was going to put Vermont on the map for FARA's grassroots fundraising!

FA Woodstock 2018

FA Woodstock 3My favorite FA event of the entire year is FA Woodstock. Now, I will admit that I am biased since FA Woodstock 2016 was my first FA event ever. Nevertheless, I am here to tell you about this phenomenal event that takes place every summer.

When you hear, "La Porte, Indiana," what do you think of? It probably isn't Woodstock, but it should be. FA Woodstock has tie-dye, camping, art, an unparalleled sense of unity and is 3 days of peace and music (the sound of rain, laughter, and wheelchairs rolling down the boardwalk). Though Jimi Hendrix does not attend and I have yet to see a Deadhead in attendance, Dr. Lynch is a spectacular substitution. And let's be honest, in the world of FA, Dr. Lynch is as cool as Jimi Hendrix. Each year, Dr. Lynch and his team attend FA Woodstock to collect blood and skin samples. (You'll have to forgive me. I have tried to be clever and find ways to compare FA Woodstock with Woodstock 1969, but for "blood and skin samples," I'm at a loss. Anyway...)

Jumpin' for Jazz Fundraiser Hit the High Notes

Jumpin for Jazz collageJune 10, 2018, marked a high point as music lovers and those fighting Friedreich's ataxia gathered at the Jazz Kitchen in Indianapolis. Several favorite artists—the Rob Dixon Trio, the Morris Kienle Duo and Fresh Water—donated their talents and delighted the crowd.

Dr. Mark Payne gave an update on his promising research, which is expected to go to the clinical trial phase soon.

Indianapolis Mayor Joe Hogsett had proclaimed June 10 as Jumpin' for Jazz Day, acknowledging what founder Virgil Harris and his daughter, Jazmyne, had set in motion to fund research and education on FA and support families dealing with the disease.

As important as the funds raised were the new friends recruited to the cause and the renewed sense of purpose that flowed through the Jazz Kitchen along with the skilled improvisations of the artists. To read more about Virgil Harris, Jumpin' for Jazz and his daughter Jazmyne Harris, click here usat.ly/2HZ8BwX.

 

6th Annual Mother’s Day Race for Christina

Mothers Day Race Collage“There is no treatment or cure. However, there is a strong sense of courage and hope in the FA community, due to ongoing research and clinical trials because of grassroots events like this,” said race organizer Christina Logan.

The 6th Annual Mother’s Day 5K Race for Christina was an absolutely amazing event, held at the beautiful Tyler State Park in Richboro, PA on Sunday, May 13th (Mother’s Day). When registration began at 8:30 am, the morning started out with a chill in the air from a cold and rainy night before. But as friends and FAmily gathered, you could feel the hope and determination in the air. We weren’t going to let a little rain stand in our way to cure FA. This belief that brought us all together on that morning, helped to warm us for the race.

A Night to Fight FA Round 2

Burrow Hill PhotoOn April 7, 2018, The Burrows Hill Foundation held 'A Night to Fight FA Round 2' auction fundraiser. After our event last year was such a success, we knew we had to have it again. And for the second year in a row, it was fantastic. We are so happy that our auctions have been able to raise money for research and awareness.

We held the event in the Akerson Tower at the Navy-Marine Corps Memorial Stadium, while a Navy lacrosse game was being played outside. Our silent auction included over 60 items and our live auction included trips to Jackson Hole, St. Barths, Sanibel Island, Montana and tickets to The Late Show with Stephen Colbert. In addition, we had two beautiful wooden stand-up paddleboards, that were handmade for our event. We are so grateful that Kyle Bryant was able to speak at our event and talk about everything that he has accomplished. The event raised about $145,000 and we are so incredibly grateful for this and for everyone that attended!

SamHill CommunityContributor

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