It is an honor to officially announce our 9th Annual Moonbeam Caregiver Award! Congratulations to Sheryl Magelssen and her late husband, Paul, of Woodbury, MN! Sheryl and Paul are the grandparents to Drew, who has CLN3 Batten Disease, and his sister, Lydia, who passed away in August of 2020, from CLN3. According to the nomination,…
DetailsHelp us shine a light upon those who shine bright for our loved ones with Batten Disease! Nominations for our 9th annual Moonbeam Caregiver Award are now open!! To nominate your special caregiver who has made a positive impact in your life, please fill out the nomination form on our website before 11:59PM CST on…
DetailsIt’s Raffle Time!! We will be selling $1 “Summer Fun” raffle tickets for our Ethan’s Reason Birthday Fundraiser on May 13th-14th. Raffle drawing will happen at 7:00PM CST on Saturday, May 14th. Need not be present to win! Must be at least 18 years of age to purchase. If you are local to any of…
DetailsHave you seen these awesome adaptive costumes from Target and Disney? If you are searching for a special costume or even just fun accessories for your loved ones with Batten Disease, as well their siblings or bereaved siblings, who love dressing up (regardless of age!) please reach out to Ethan’s Reason via FB messenger, email,…
DetailsWe are honored to officially announce our 8th Annual Moonbeam Caregiver Award recipient! Congratulations to Vanessa Severance of Lake Villa, IL! Vanessa is mother to Grant, a child with CLN2 Batten Disease, and his twin sister, Vivian. According to those who nominated Vanessa, Vanessa is “the perfect mama bear,” as a strong advocate for Grant’s…
DetailsJune 9th is International Batten Disease Awareness Day! Time to shine a light on those who have shared their light with our families and loved ones Batten Disease! Nominations for our 8th annual Moonbeam Caregiver Award are now open!! To nominate your special caregiver, please fill out the nomination form on our website before 11:59PM…
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They did it!!!! They BUZZED IT FOR BATTEN DISEASE!!! John and Luke joined forces to raise $2156 for Ethan’s Reason, and in holding up their end of the bargain for meeting and far-surpassing their $800 goal, they went to their 4:00 barber appointment this afternoon and let the hair fly!! Thank you to John and…
DetailsPresented by the Centennial Middle School Activities Department What? A timed 5k run and 1 Mile fun Walk/Roll to benefit Ethan’s Reason, a nonprofit organization with a mission to advance research, education, and public awareness of Batten Disease and rare diseases and to support individuals and families who have been affected by Batten Disease and…
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