And Tomorrow it Begins

purple-nailsTomorrow starts Rett Syndrome Awareness Month. Needless to say, all around the world parents, researchers, doctors, aides (the lovely ones, like Curry), siblings, grandparents and loved ones are going to bombard their Facebook pages with statistics, symptoms, pictures of purple fingernails and toe nails and hair. They are going to put up purple lightbulbs, have Strollathons, have Blue Sky events, fundraisers galore. Basically, we are going to be super annoying to a large part of our communities and in the words of Maya DiMeo (mother on the amazing show “Speechless”) ….”don’t care.”

Even though we all try and raise awareness throughout the year, every October we become galvanized, determined, desperate to make people hear our plea-Help us cure our children.

And, to start the month off in a great way, Rettsyndrome.org , along with the generous support of Newron (the ones doing the Sarizotan clinical trial), has put together this marvelous video. I saw some very familiar faces and families, and it was such a surprise to see my Katie in there too. The ending had a particular impact on me because “there is hope we can reach them again” I’ve seen it during the Trofinetide trial. I KNOW it is possible, and more importantly so does Katie.

Please share this video and bring on October!

Advertisements
This entry was posted in cure, Dr. Walter Kaufmann, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, NNZ-2566 trial, Rett Research, Rett Syndrome, Rett syndrome conference 2016, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Trofinetide and tagged , , , , , , , , , , , . Bookmark the permalink.

2 Responses to And Tomorrow it Begins

  1. Linda E. Williams says:

    Hi Melinda, Thank you so much for sending me the video. What fun to see Katie actively participating. I am finally able to send the raffle books for the fund raiser. You should receive them within a week. God bless and be well; you are needed every day to spread joy where there had been none. L

  2. melelllan says:

    Aw, thank you, Linda. And thanks for the books, every donation helps so much. I’ll send pictures from the event đŸ™‚

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s