As October arrives, most of us begin thinking about the fast approaching holidays. It’s the time of year when we look forward to sharing our precious time with family and friends, and enjoying the traditions and festivities of the season.
Additionally, it’s a time of year where many of us want to extend our generosity beyond traditional gifts through the giving of our time and money to those causes that have special meaning to us, for whatever reasons.
For us, October carries a great importance because it’s Rett syndrome awareness month.
What’s the significance to us? Because, it was just 18 years ago when our family first met a wonderful young lady named Bea. Ever since that introduction, she’s been a blessing in our lives along with her parents, grandparents, and sister.
If you’re not familiar with Rett syndrome, it’s a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and begins to show its effects in infancy or early childhood. It can often be misdiagnosed as autism or cerebral palsy, because it causes problems in brain function that are responsible for cognitive, sensory, emotional, motor, and autonomic function. These can then impact learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
As one can imagine, Rett syndrome can present numerous challenges to those living with the disease, as well as those caring for them. But with therapy, assistance, and endless amounts of unconditional love, every single one of them can benefit greatly by participating in typical life activities like school, social, educational, and recreational programs. Even our Bea was able to attend her first prom like any other young girl her age.
Years ago we made the decision to do something to not only help raise awareness about Rett syndrome, but to raise funds for the incredible research underway.
Hence the Angel Plate was born.
In 2014, we started by producing one each year with the idea to create a set of four that could be displayed together on a wall or shelf, or used during special occasions. We explained the significance to our artists and partners in Italy, and they have been honored to design and produce Piastra Angelo with great care.
2017 marks the final year for the Angel Plate Collection. These plates are a one-of-a-kind gift, limited in number and signed by the artist. 100% of the profits go to Rett syndrome research. You can order the new 2017 plate, or you can collect all four as we still have a few from the previous years available.
While we know our contribution is a very small one, we like to think that we’ve been a part of helping further research, and ultimately finding a cure for Rett syndrome.
The amazing news is that researchers have been making wonderful strides over the past several years. Their research strategy has yielded unprecedented results, including that researchers now know what causes Rett and have proven it’s reversible. For the first time, they potentially have a treatment, Trofinetide, which could profoundly impact the disorder. Trofinetide increases the amount of connections in the brain that control thought and movement. Trials have shown improvements after less than two months, and because of the way it works, they could expect to see continued improvements over a longer period of time. Trofinetide potentially offers measurable change to every person living with Rett syndrome.
It’s for research such as this that we continue to bring attention to Rett and look for ways to raise funds for more critical research of this nature.
If you’d like to learn more, visit www.rettsyndrome.org for ways you can support this important cause.
We are incredibly grateful to all of you for your continued support. Thank you on behalf of all of us, and most importantly, our lovely Bea and her family.