The Event:

Kevin and Lindsey Coupe are hosting their 4^th annual golf tournament to benefit the BrAvery for Avery Fund, a family-advised fund held at KrabbeConnect in memory of Avery Coupe. KrabbeConnect is a nonprofit 501 (c)(3) organization working to reach a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease. This event will be held on Sunday, August 18th, 2024, at Crystal Lake Golf Club in Mapleville, RI. Ticketed guests will enjoy a round of golf, a bagged lunch, dinner, raffle prizes, and a silent auction. Please note that a limited number of dinner and silent auction tickets are available for those who do not want to golf

We need YOU to join us for this important event. With each drive, chip, and putt, we honor the bravery of Avery and all those battling Krabbe disease, while also raising vital funds and awareness to support research, treatment, and advocacy efforts. Together, let's make this day one of triumph, unity, and unwavering support as we drive towards a future free from Krabbe disease. The Coupe family and KrabbeConnect thank you for joining on their inspiring journey to help patients live a life free of Krabbe disease.

Avery Coupe's Story:

Avery was 4 months old when Lindsey and Kevin noticed that she was regressing in her development. What first began as feeding difficulties, quickly turned into a 5-month journey to determine why Avery was not meeting milestones. In the early spring of 2019, Avery began visiting numerous doctors and undergoing many tests and procedures to help understand the reason for Avery’s regression. After an MRI and genetic testing in June 2019, Avery was diagnosed with a rare, genetic disease called Krabbe disease. Krabbe disease, also known as Globoid Cell Leukodystrophy. Krabbe disease is a severe neurological condition that impacts the protective covering surrounding nerve cells. This protective covering is known as the myelin sheath, an essential insulation around the nerves allowing quick electric signals to carry information throughout the body. When the sheath is damaged the electric signals slow down or don't occur at all.

For the next 10 months, Kevin and Lindsey cared for Avery in their home in Warwick, RI with support from their family, friends, and the Krabbe community across the country. Through the support of organizations like KrabbeConnect, Kevin, and Lindsey were able to seek out the best doctors and resources to ensure that Avery had the best quality of life. Avery enjoyed life with her parents and big brother at home. As her disease progressed, Avery’s care team worked to meet her unique and delicate needs.

On May 2, 2020, Avery passed away from Krabbe disease. There is currently no cure for Krabbe disease.

The BrAvery for Avery Fund:

Kevin and Lindsey began working with KrabbeConnect to establish a fund in Avery’s memory. The BrAvery for Avery Fund is to help advance research for Krabbe Disease to help find a cure. Kevin and Lindsey do not want another child to suffer from this awful disease.

Auction

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