Hey guys, hoping this note finds everyone well and getting ready to head back to school. Make sure to check out our newsletter links below for the upcoming edition of Rett Girl Magazine! It will be full of timely information for back-to-school, some cool new products in the GP2C Shop (where we are so excited to introduce Taryn Haas as our new collaborating artist) and tips for getting back into the rhythm of the school year. And make sure to check out my new article, “Keep Them Ready!”
From the research world – we want to make sure everyone takes advantage of this:
https://exploregenetherapy.com/get-updates
This is a great resource from AveXis-Novartis to help you track all the latest news and exciting developments from the gene therapy studies and trials! Sign up and don’t miss any of the breaking news!
I also came across an interesting article which you might like also (I’ve included a few segments from the article below):
https://medicalxpress.com/news/2018-07-limited-mecp2-gene-relieve-symptoms.html
A Massachusetts General Hospital (MGH) research team has developed a new female mouse model for the neurodevelopmental disorder Rett syndrome and in the process found evidence that relieving symptoms of the genetic disorder may require only partial expression of the normal copy of the involved gene, MECP2….
“What was remarkable… was the therapeutic benefit observed in female mice in which MECP2 was expressed in only 5 to 10 percent of brain cells. The mice showed significantly extended life and reduced disease severity.”
“…Even small amounts of MECP2 expression appear to have big effects, which is very promising for the development of Rett syndrome treatments. …Partial reactivation could yield therapeutic effect while reducing potential side effects. The X reactivation approach would also be an alternative to gene therapy, which is challenging because MECP2 expression needs to carefully controlled, since too much leads to neurologic disease. Finding that not every cell needs to express MECP2 for therapeutic benefit indicates that a very low, safe dose could be effective.”
All good stuff and keeps us working hard every day here at GP2C on behalf of our Rett kids!
But we need you too! If you have the desire and energy, we can help you make it happen! Be it a dinner, luncheon, or charity run or ride, we can support you with website development, participant registration, collection of funds, artwork and graphics, social media promotion, programs, prizes and more. Know anyone who sells oils? Vitamins? Jewelry? Many of these good folks love to do charity profit-shares! Give them a call! With everyone chipping away, we can collectively make a huge difference!
And last but not least – Disney Princess 2019 is in full swing! Don’t miss your chance to get your bib, and we are looking forward to seeing everyone in Orlando next February.
Have a great August!
Kevin
