Knowledge is Power

Categories: Blog

As a foundation, we know that caring for a child with Rett can be challenging. Connecting to other families, identifying current research and therapies, and finding educational resources can empower, provide hope, and impact families living with Rett syndrome.

That’s why we’ve created these educational opportunities for 2020—4 regional Ed Days and 12 RettEd Webcasts—that feature doctors and specialists who share our vision for delivering information, treatments, and ultimately a cure for Rett syndrome. 

RETT ED DAYS

In 2019 we hosted 3 Ed Days that helped 275 people who are living with Rett, many of whom traveled several hours to connect with other families, be inspired by new therapies, and learn how to find resources in their community.


Heidi Haselson, Bethany’s mom, raved about the Boston Ed Day: “[It] was well put together and inclusive. Great food, great energy, great speakers, and a very respectful experience. Making connections with those who share an understanding of what it takes is immeasurable, and all that attended gave so much more compassion and acceptance than I can ever be grateful for. Can’t wait for more opportunities like this one.”

Sometimes caregivers find new ways to utilize technology in their homes. Joanne Gryniewicz, Ava’s mom, shares how a seemingly small idea can make a big difference: “My jaw dropped when it was demonstrated that Wiki Sticks could be stuck to the Tobii screen to highlight!! How do they think of these things?!”

And many are encouraged to find how many Rett resources are close to home. Maureen Charamella, Deidre’s mom, shared her experience from the 2019 Philadelphia Ed Day: “The doctors and professionals are available to patients for questions right in their back yard!! Awesome! As a parent with an older Rett girl – this is HUGE. When [Deirdre] was small – we had to travel far for information. Also, other parents are close for support.”

This year we’ve expanded into 4 Ed Days strategically placed across the U.S. so that we can serve more families. Topics and discussions will include research updates, medical and therapeutic intervention strategies, state specific programs and services, communication strategies, and other unique workshops. As we get closer to the dates, we’ll provide a detailed agenda. Please consider joining us as we partner with clinics and regional associations to bring you critical information to help you on your Rett journey.

2020 Ed Day Lineup

RETTED WEBCASTS

In 2019, we hosted 1,711 webcast participants who represented 59 countries around the world. Based on your feedback and the current direction of Rett research, we’re back with an enhanced 2020 lineup that features expert speakers on various Rett-related research and care topics to help build your personal pathway to empowerment.

“For someone living with Rett syndrome, life is dynamic. Symptoms change. . . . What is needed today may be very different than what was needed yesterday, or what will be needed tomorrow,” says Paige Nues, Rettsyndrome.org Director of Family Empowerment. “Our free, on-demand webcast library allows access to what is needed, when it is needed, minimizing the impact of life’s inevitable changes. We can also rapidly deliver new treatment and research information to families as soon as it becomes available, to be put to use right away, without families having to travel or wait for an appointment or overcome scheduling conflicts.”

Here’s what some past attendees had to say about their RettEd experience:

“Our daughter is 23 and we are being forced in the “adult” doctor world and I have used the medical information more than once in doctor’s appointments recently. Knowledge is power and even this far into our journey I am still learning the reasons why and new treatments that are available. I have found through this journey that doctors respect and work as a partner when I communicate on an educated Rett level, and I feel the webcasts are a perfect and easy way to gain knowledge!”— Liesha, mom to Brycelyn, age 23

“I could kick myself for not paying attention and making the time to listen/watch these webcasts before now. Perhaps many of you have already joined them. If not, I highly recommend you to do so. They are very informative and are presented in a way that all of us can understand. I’m excited to listen to all of the other ones that have been recorded.”—Katie Nee, mom to Annie, age 17

“Thank you so much for all of the work you do to provide the sessions. I have learned so much over the years, and the information is invaluable to me as I work with my student.”—Martha Spencer, Special Education Instructional Assistant

“When I encourage families to call in to them I always tell them that I learn something new every time I listen. I not only think these are helpful for families but for our providers. I have loved the ones from the family perspective- I learn the most from them helping me see life their/your view.”—Tristen Dinkel, Rett Clinic RN Program Coordinator, Neuroscience Institute

You’ll be able to send in questions in advance, interact with the presenters in real-time, and hear from other families. At the end of each session, you’ll also have a chance to ask questions. There is no cost to participate, but online pre-registration is required. So register and join Rett families for the following interactive and informative live RettEd webcasts!

JANUARY 7: IN SPANISH: ¿QUÉ ES EL SÍNDROME DE RETT (View Recording)

Our bilingual Rett syndrome expert neurologist Dr. Mario Petersen discussed ¿Qué es el síndrome de Rett. The webcast recording has invaluable information for your Spanish-speaking loved ones who want to better understand Rett syndrome.

Presenter Bio: Dr. Peterson is the Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children’s Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University.

FEBRUARY 11: GENE THERAPY CRISPR/CAS9 (Register Now)

Drs. Fink and Pichard will explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This information will be especially helpful to caregivers trying to understand the current state of this research and where we are headed.

Presenter Bios: Dr. Fink is a gene therapy neuroscientist at UC Davis in San Diego. Dr. Pichard is Rettsyndrome.org’s Chief Science Officer.

MARCH 10: WALKING AND RETT SYNDROME WITH DR. MEIR LOTAN (Register Now)

Movement and orthopedic issues often arise in those with Rett syndrome. We will discuss how and when these typically occur, what we can do about it, walking and ambulation across the lifespan, and effective strategies you can use at home.

Presenter Bio: Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of individuals with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel.

APRIL 23: MAXIMIZING NEUROPLASTICITY IN THERAPIES (Register Now)

The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in occupational therapy and functional hand use.

Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher.

MAY 12: MINI BRAINS IN SPACE – PUSHING THE LIMITS OF SCIENCE (Register Now)

Dr. Muotri will share how he and his lab are pushing the limits of science in the name of your loved one with Rett syndrome. His lab uses animal models, neural stem cells, human and other primates’ pluripotent cells, and several tools to investigate brain development, evolution, and neural disorders, including Rett syndrome. Recently, he has received headline attention for his experiment to study the impact of microgravity on human brain development, research which could improve disease modeling for neurodegenerative and developmental disorders as well as give clues into the future of humanity in space.

Presenter bio: Dr. Alysson Muotri is an award-winning neuroscientist, Rett syndrome expert, and Director of the Stem Cell Program at the University of California at San Diego.

June through December is shaping up as well. Here are some of topics we’re planning to include:

  • Rett Syndrome Research Update
  • Longevity in Rett Syndrome
  • What Hurts? Understanding Pain and Rett Syndrome
  • Life Hacks for Rett Syndrome
  • Clinical Trial Update
  • Communication in Rett Syndrome
  • What Do They See? Vision in Rett

Dates and subjects are subject to change. If you have topics you’d like us to consider for future webcasts, please let us know by emailing pnues@rettsyndrome.org.

And please don’t forget that all of our past webcast recordings are available for free at www.rettsyndrome.org/education. Past topics include Sleep, Epilepsy, Clinical Trials in Rett Syndrome, Communication, Nutrition, and more.

Help us over power Rett