Author Archives RMRA

  • Beat the Busy Holiday Season and Donate Early Schedule Your Donation NOW Tuesday, December 6th, 2016 is Colorado Gives Day. It’s more than just a day. It’s a movement that inspires and unites thousands of donors to support their favorite causes online through ColoradoGives.org. On this one day, your donation is worth more than on […]

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  • TEA PARTY DREAMS By Vanessa Covington In the corner of my daughter’s room sits a child-size wicker chair. Not quite blue. Not quite Lavender. I bought it for Martilee’s first birthday with anticipation of tea parties, teddy bears and dress-up bonnets. I dreamed of special mommy-daughter times—escapes from the world of her two older brothers […]

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  • Thank you all for coming! The first Rett Clinic Family Symposium was held on October 1, 2016. The event was organized by the Rett Clinic at the Children’s Hospital Colorado and sponsored by Rocky Mountain Rett Association. Eight clinic specialists and guest speakers were on site to discuss a range of topics for families, who […]

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  • October is Rett Awareness Month! The team at the RMRA developed a social media outreach plan hat will include photos, stories, RMRA events and Rett facts. Please follow RMRA’s Facebook page and like, comment and share the posts. We are also working to engage our community in Wear Purple for Rett Awareness on October 21st. […]

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  • Enroll now for the Natural History Study The NIH funded Natural History Study has been in the works for several years. In October 2014 a co-operative agreement was announced to fund research for the study with the Research Consortium to be led by Dr. Alan Percy University of Alabama at Birmingham. The study is funded […]

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  • Go Team Reps for Rett in the Do More Charity Challenge On October 1st and 2nd more than 200 athletes will be sweating to support their passion organization; and six of them are sweating specifically for the Rocky Mountain Rett Association. Team Reps for Rett with Scott, Jasmine, Diana, Kristen, Matt and Dan, all well-seasoned, […]

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  • On Saturday August 13th, the Rocky Mountain Rett Association hosted its signature event, the 12th Annual Walk n’ Roll.   It was a beautiful day in Colorado with blue skies and without the usual blazing August heat. About 250 people participated in the event and many of them strolled around the scenic Lake at Robert […]

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  • Meet Anna, fundraising rock star! Anna Cummins is a very special little sister. Her sister Maddy was diagnosed with Rett Syndrome at age 2 1/2 and having a sister with a disability asks a lot of other siblings. But Anna plays an amazing role in the Rett Syndrome world. Anna is a bright, beautiful and […]

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  • The Columbine Courier published an interview with the Moore family! Local family hoping for a cure At first blush, South Jeffco resident Tatum Moore appears to be a pretty typical 10-year-old girl. She enjoys dancing and twirling to music, and spends a lot of time chasing her 5-year-old brother, Tegan, around the living room. Tegan […]

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  • Science Update by Dr. Benke – July 2016 I had the pleasure participating in the 14th Rett Syndrome Symposium in Illinois end of June. The Symposium was sponsored by Rettsyndrome.org, united Rett and Rett-related disorders (CDKL5, FOXG1 and MeCP2 dup) with their support groups. Topics discussed included basic research (“how do things work?”), translational research […]

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