Category Archives: Rett syndrome Awareness

Acadia is All in For Rett

Posted on October 12, 2023 by melelllan

I had the great honor and pleasure to present at an Acadia “Lunch and Learn” event on Oct. 3rd. Over 100 employees were in attendance with more online watching the webcast in San Diego and Princeton. This is the second … Continue reading →

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Kylie’s Story

Posted on January 31, 2023 by melelllan

As we are coming to the close of a chapter in our own lives, Katelin and mine, it is important to remember and acknowledge that interwoven, yet separate, stories are integral to the Rett syndrome journey; each story has a … Continue reading →

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Eye Gaze Artist to Reveal Rett in Color for October

Posted on October 2, 2022 by melelllan

Emily Shifflet is an eye gaze artist living with Rett syndrome. She has teamed up with ACADIA to create a mosaic from photographs YOU, the community, provide. This is an incredible opportunity! Not only will the community get to participate … Continue reading →

Posted in Acadia, Emily Shifflet, Rett syndrome Awareness, Trail to a Texas Trial, Uncategorized | Tagged | Leave a comment

Patient Focus Drug Development Meeting

Posted on March 19, 2022 by melelllan

On March 11, the global Rett Community had an extraordinary opportunity- to educate the FDA about the severe consequences of having a child with Rett syndrome- for the child, the family, the community and society. As we listened to the … Continue reading →

Posted in boys with Rett syndrome, FDA, Rett syndrome Awareness | Tagged , , , , , , , , , , , , | 2 Comments

Rett syndrome Awareness Month #10 Letting Go and Holding On

Posted on October 17, 2021 by melelllan

I remember, when Katelin was young, watching her lose her skills over an eternity of three months. I was DETERMINED to give her normal childhood experiences. I put her on a swing with a back but no front, she fell … Continue reading →

Posted in acceptance, anxiety in Rett syndrome, baseball, Communication, Education, hope, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Special needs siblings, Trail to a Texas Trial | Leave a comment

Rett syndrome Awareness Month #4 Helping Hands/Fundraisers Galore

Posted on October 4, 2021 by melelllan

One of the mainstays of this month is fundraising! From small pumpkin painting ones and the ever popular purple fingers and toes nail polish ones, to jewelry and other small businesses holding parties with a portion going to a charity … Continue reading →

Posted in David Clements, fund-raising for rett syndrome, gp2c, Kevin Black, Raising a Hand, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial | Tagged , , , , , , | Leave a comment

Rett syndrome Awareness Month #3 A Steeper Hill

Posted on October 3, 2021 by melelllan

This poem still resonates with me. I think the hill is slightly less steep than it was at the beginning, though, and that is such a relief. Just keep on keeping on, we’re going to make it to the top … Continue reading →

Posted in Army of us, boys with Rett syndrome, Poetry, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial | Tagged , , , , , , , , | 2 Comments

Rett syndrome Awareness Month #2 Sucker Punches

Posted on October 2, 2021 by melelllan

Rettsyndrome.org has a glossary of words and definitions! I must admit that I only recently learned this, so kudos to whomever put this all together. When Katelin was first tentatively diagnosed with Rett syndrome at the age of 18 months … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, Education, grief, hand clasping in Rett syndrome, homeschooling, Human body, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , , , | Leave a comment

A Rose by Any Other Name…is Still Rett Syndrome

Posted on April 9, 2021 by melelllan

This is something I’ve wanted to get off my chest for sometime, years actually. It’s bothered me at times, hurt me at times, frustrated me often and made me hurt for others so many times I can’t count. It’s the … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | 5 Comments

In The Spotlight- Dr. Helen Leonard and Telethon Kids Institute: Part I

Posted on November 16, 2020 by melelllan

Dr. Helen Leonard is a world renown specialist in Rett syndrome and related disorders. Her database of Rett syndrome and its mutations is one of, if not the, most comprehensive in the world.
Continue reading →

Posted in Australian Rett syndrome Association, Dr. Helen Leonard, Dr. Jenny Downs, InterRett, Rett Research, Rett Syndrome, Rett syndrome Awareness, Telethon for Kids, Trail to a Texas Trial | Tagged , , , | Leave a comment