Author Archives RMRA

  • Participate in the Natural History Study Thanks to the Rett community at large, the second rendition of the Natural History Study is underway at 15 sites around the US!  But we still continue to push for more participation in this critical study that seeks girls and boys of all ages with Rett syndrome (classical or atypical), […]

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  • IN THE MEANTIME This is a guest blog by Jennifer L Hill, Family Home Health Services When you are with family home health services, you are with family! Contact: 720 298 5259 Due to the rarity of Rett syndrome, very little has been published about long term prognosis. While medications, physical and speech therapy along […]

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  • Risers 4 Rett Event Director Patrick Callahan gives us a summary of the spring 2018 event: We kicked-off the spring 2018 event around dusk on Thursday, April 26th at the Almont resort. Welcoming approximately 50 participants and 25 guides that evening, we shared some good grub (Elk Brats and Buffalo Burgers), put on by Mike […]

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  • Thank you all for coming to our 12th annual Spaghetti Dinner on April 21st, 2018! Our hosts, the Elks Lodge in Louisville, provided delicious Spaghettis, salads and desserts. A huge silent auction was put together by Cathy and Bob Shorma – thank you! We are waiting to hear the final numbers, but it looks like […]

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  • Our Risers 4 Rett team just finished the spring tournament and we’ll share an update soon, BUT: the registration for the fall tournament just opened. Lock in your spot by 5/31/18 for a $200 discount! Check it out the necessary info on our event page. PLUS: Please share the flyer with lots of people and […]

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  • EXTENDED now for Rett children with birthdays in April, May & June Get a Birthday Party by Brandi If your Rett child has a birthday in January, February or March First Come – First Serve Newly founded organization Birthdays by Brandi Foundation has partnered with the Rocky Mountain Rett Association to sprinkle happiness and share smiles […]

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  • RMRA’s 2nd Annual Mommy & Me Makeover Magic   The Mommy & Me Makeover Magic is a day for Rett girls and their moms to be pampered and enjoy a day together without the usual doctor or therapy appointments. That is the idea behind the Mommy & Me Makeover Magic, which was held for the […]

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  • Rett Clinic is looking for older Rett patients This is a request submitted by the Rett Clinic at Children’s Hospital Colorado   As a clinic we are hoping to reach out to the older population of those diagnosed with Rett, CDKL5  and other Rett-like disorders. First, we would like to make sure to invite you […]

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  • The 2017 Judi Masters Award honors AlloSource   Judi Masters was an incredible promoter of knowledge and information about Rett Syndrome. She engaged her community in supporting all children with Rett. She made amazing inroads into building this awareness. In fact many past and existing RMRA board of directors and volunteers got involved thanks to […]

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  • Get a Birthday Party by Brandi If your Rett child has a birthday in January, February or March First Come – First Serve Newly founded organization Birthdays by Brandi Foundation has partnered with the Rocky Mountain Rett Association to sprinkle happiness and share smiles with children on their special day. Birthdays are a milestone that should be […]

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