2021 Benefit Gala
New Date TBD
Join us at Hotel Northland for our first event. This is a chance to dress up, eat good food, bid on some amazing auction items, and of course… learn about Rett Syndrome and the hopeful progress.
This is Willa
Willa has a non-inherited, genetic neurological disorder called Rett Syndrome. It’s been described as being a combination of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder. Periods of regression usually start when a child is 6–36 months old and include losing the ability to speak, walk, eat, use one’s hands, and breathe easily. Currently, there is no treatment for Rett, but that is changing rapidly.
How to Help
We will be the first to admit that we need all the help we can get! We’re leaning on the kindness and knowledge of our community and friends. So far, we’ve been so touched by the support we have had with this event. Here are ways to help:
Join the Team
We need folks to help identify and contact potential donors who may be interested in sponsoring the event in some way. We want to get the word out as best we can and with each individual brings a whole new circle of friends.
Donate to the Auction
We’re collecting a range of auction items for the event. If you are an artist, maker or business owner who would like to contribute, we would be so grateful. Our goal is to have a diverse range of items. We will make donating as easy on you as possible and pick up at your convenience.
Help at the Event
There will be many duties and tasks during the event for which we will rely on friends and family. If you want to lend a hand, we would be so grateful. Examples would be selling raffle tickets, setting up the auction, or working check out.
More About
Rett Syndrome
As a parent, we would broadly describe Rett Syndrome being as if Willa were trapped inside of herself. We see glimpses of her full self at times and know she’s there. And we also see that she is increasingly aware of and frustrated by the progressive challenges she has. For a casual observer, it looks like she has severe autism. Unfortunately, there is much more going on medically.
Symptoms include
Irregular breathing and breath holding
Apraxia or Dyspraxia
Extreme anxiety
Gastrointestinal issues
Impaired circulatory and cardiac function
Teeth grinding
Crying and irritability
Difficulty chewing and swallowing
And more…
Loss of speech
Impaired social skills
Loss of ability to walk
Loss of purposeful hand use
Microcephaly
Scoliosis and fragile bones
Seizures, including absences
Compulsive hand clasping and wringing
Sleep disturbances
350K
number of people worldwide
Rett is considered a rare disease as it impacts only 1 in 10,000 females (and yes, there are boys too!). Statistically, in Northeast Wisconsin, there are dozens of people living with Rett Syndrome in our community.
900
number of different mutations
How Rett is expressed is so varied and we’re unable to predict the progress of the disorder in an individual. This is because of the type of mutation, the location of the mutation in the gene, and the random X-activation of each person.
X-DNA
located on the x-chromosome
Rett is far more common in girls because it’s linked to the X-chromosome (boys only have one X, so it tends to be more severe and deadly). Our bodies randomly activate one X over the other, which can partially account for the severity of one case over another. For example, some girls are never able to walk and some may only present as having an intellectual disability.
“Without awareness, there is no funding. Without funding, there is no research. And without research, there is no hope.”