Another year has come and gone, and we're back in the holiday season. October has taken on a new meaning for me since Zoey's diagnosis. Even though we received our diagnosis in August of 2019, we didn't really "celebrate" it until 2020. Now, Sarah and I begin chatting about what we want to do to help bring awareness in May each year.
Lots of people do extraordinary things - strollathons, flyers, and even fundraisers for those who are more ambitious than I. 😉 Sarah and I found that posting on social media was enough; and by posting, I mean literally just text. Yes, we'll add a photo and link here and there, but our posts are mainly text. And I'll be honest; we have had more success bringing awareness about Rett syndrome to our family and friends than anything else.
I know that can seem like a lot to do - and it is. But that's where Sarah and I want to help. Back in 2020, we sat down to discuss specific topics we wanted to share for each day of Rett Syndrome Awareness Month. 31 days = 31 posts. After 10 minutes of brainstorming, we discovered that we had filled every day with a topic! It really was that simple.
I would hate for anyone else to experience the stress we initially went through when coming up with topics, so we've put everything together in this handy-dandy table below. And by all means, feel free to change and adjust anything that we've listed here. This is not the list to end all lists; we want to help you discover new ideas and ways that you can share your experience with Rett syndrome.
Day | Topic |
October 1 | Introduction to Rett Syndrome Awareness Month |
October 2 | A brief explanation of how Rett syndrome begins to present itself |
October 3 | More facts about Rett syndrome & the beginning of receiving the diagnosis |
October 4 | Share a 'win' for your individual with Rett syndrome |
October 5 | Physical therapy |
October 6 | Occupational therapy |
October 7 | Speech therapy |
October 8 | Family dynamics and siblings |
October 9 | Rett clinics |
October 10 | Being a 'normal' family despite Rett |
October 11 | Share your favorite Rett syndrome resource/community |
October 12 | Adapting life because of Rett syndrome |
October 13 | Travel hurdles with Rett |
October 14 | Medical stages 1 & 2 of Rett syndrome |
October 15 | Medical stages 3 & 4 of Rett syndrome |
October 16 | The mutation |
October 17 | Life expectancy |
October 18 | Letter to an individual with Rett |
October 19 | How others can help |
October 20 | Communication |
October 21 | A little bit about your individual with Rett besides Rett |
October 22 | Gene therapies |
October 23 | Being an advocate |
October 24 | Thank the people who support you |
October 25 | Ask your followers what they have learned about your individual with Rett during the previous 25 days |
October 26 | School and education |
October 27 | Adapted toys and tools |
October 28 | Rett does not define [individual with Rett] |
October 29 | The little wins are big wins |
October 30 | Another family member's or friend's perspective |
October 31 | Please donate to a reputable Rett-focused organization |
Some of the topics listed can seem really abstract, so in the coming days, we will share even more information on ways you can bring awareness to Rett syndrome during October. Be sure to bookmark our website and sign up for email notifications to receive updates on everything.
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