THE POWER OF
THE SEASONS BEST
GIRL POWER IN
THE EVERYTHING RETT SITE
“RETT GIRL MAGAZINE HOLIDAY 2017” © COPYRIGHT 2017 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED
This issue, we are celebrating our Rett Women who have paved the way for our younger
girls and families. Their strength, courage and tenacity has inspired us all to learn,
love and hope more for the future. Join us this season in celebrating Rett women all
over the world!
2 HOLIDAY 2017
The holidays are fast approaching and whether that brings
joy, sadness, anxiety, excitement, all of the above or some-
thing in between, I get it. The holidays tend to be a time
that stir up all sorts of emotions and dealing with Rett
Syndrome in the midst of it all can sometimes be a lot. This
is the time that we all have to remember that we are not
alone, but rather, part of a large family, supporting each
other, walking the journey together, holding each other’s
hand, not only during this season, but every season.
It’s the most wonderful time of the year! OK, hear me out. Our Holiday Magazine was created with that very thought
I know the holidays seem loaded with land mines for our in mind. This issue, we worked to create a magazine that
sweet ones with Rett Syndrome. They bring questions, would help give practical ideas, functional activities, a little
uncertainties, health or emotional crises, party/travel/gift help with gift giving, a glance back at how far we’ve come,
anxieties or even uncomfortable interactions with and maybe a little hope for the New Year too.
well-intentioned family members. As this year starts to wind down and the New Year
We’ve been there. My special kiddos Brynn and Will, are approaches, I want to send a very heartfelt THANK YOU to
about to experience all the highs and lows of their 11th all of the wonderful Rett women and families that have
and 7th Christmas seasons. My kids always remind me of paved the way for us and have helped us get to where we
the pure joy of Christmas. It radiates all season long, and I are today, and to all of the new families that are just enter-
just want to soak it all up and hold on to it forever and put ing our Rett family at Girl Power 2 Cure. I am so very proud
all the challenges in their appropriate place. that we all share a common desire, a common ﬁght for our
Honestly, holidays or not, we’re still going to have children with Rett to grow, thrive and to create a better,
meltdowns, challenges and unexpected bumps along the healthier, and brighter future for all of us.
way, right? Since that’s just normal life, roll with it this Holiday Blessings to All,
holiday season. That way you’ll have time to breathe in Bridget MacDonald
the special moments, whatever they are for you and your Rett Girl Coordinator
family. [email protected]
My most cherished holiday memories don’t have anything
to do with presents, it’s simply celebrating the season HOLIDAY 2017 3
with loved ones that mean the most. Will and Brynn enjoy
the sights and sounds of Christmas, they love to look at
the twinkly lights on the tree and listen to carols non-stop.
Will is happy when surrounded by people, and thoroughly
enjoys our group gatherings. Brynn tolerates our group
gatherings, but it too can be overwhelming, and we adjust
to make it right for her. We don’t go overboard with gifts.
On Christmas morning, we take time to help Brynn and
Will unwrap each one. Will still loves the sound of paper
They both sense the excitement that comes with each
new package. Brynn and Will have taught us to slow down
and appreciate the little things. I encourage us all to keep
this in mind as we celebrate one of the most wonderful
times of the year.
Happy Holidays to you and your family!
Family Support Team Leader
“May your Holiday be as bright as your spirits are light”
Six Fabulous Categories in this
issue of the RettGirl Magazine!
5 Winter Activities Getting Creative this season
10 Holiday Recipes with your Rett Girl
18 Holiday Gift Guide Annie Smith Cooks Up Some Great Eats
23 EDUCATION Our 9th Annual Gift Giving Guide
28 Health and Wellness Rett University- Time to Ramp Up!
34 Girl Power 2 Cure Staying Healthy this Season
What’s happening at Girl Power
4 HOLIDAY 2017
WE ARE ALL LIKE SNOWFLAKES, ALL BEAUTIFUL IN OUR OWN DIFFERENT WAYS
HOLIDAY 2017 5
Try Something New!
Chevron Christmas Ornament Tree
Get Creative with your Rett Girl
Your Rett Girl is going to LOVE assisting you in making this Holiday Ornament Tree! This is a great project that
is easy and has so many fun variations that no two will look alike! Check out the next page for
communication page sets that you can either print or download right into Communicator 5 software!
Chevron Christmas Instructions:
1 Gather your supplies which include- A wood pallet that you
can get at any craft store, a paint color for your chevron
stripes (let your Rett Girl choose the color) a bunch of
Christmas ornaments. The more variety the better and let
her choose these too! Last, a hot glue gun to put it all
2 Draw the chevron on the pallet board and paint with desired
paint color. Hint: there is an easy chevron stripe tutorial at
3 Place your star or top ornament ﬁrst. Begin placing your
ornaments in a triangle, tree shape using your hot glue gun.
Make sure to glue each ornament to the pallet board and to
the ornaments next to it.
CheckatouMtotmhemybIlsoCgopooCsotot.cuotmorial 4 Continue placing ornaments, working down until you reach
the tree stand. You may want to draw this in or place a
6 HOLIDAY 2017
Communicator Page Sets
Susan Norwell, M.A.
Sus�apn’!s Just when you thought this was just a fun activity to create a gorgeous tree, here we
come with some language modeling tips. Remember language is learned across all
contexts and this one lends itself perfectly to modeling those all important size
concepts and positional words. Encourage your kiddo to direct you to place certain ornaments in speciﬁc
places! These words are so important and often overlooked, but here they get a chance to “SHINE.” So relax,
have fun and one piece of advice. I would make the Chrevron in advance of involving your kiddos. Then let
them join in the decorating!!! Hey you can use this grid to decorate your real tree also!
HOLIDAY 2017 7
To access instructions and Communicator page set for this activity, go to rettuniversity.org
Library > Resources > Free Resources.
8 HOLIDAY 2017
Clear Plastic Ball Ornaments
So many ways to celebrate the season!
Gather the following:
• Clear plastic ornaments
• Fake snow
• A few Sharpie markers
• Ribbon and baby socks
Your Rett Girl can help choose the colors of baby socks and
ribbons. For full instructions check out the tutorial at
Here’s a way to create a beautiful keepsake. Add sand and
seashells or other memorabilia from a special occasion. Make
sure to label it with the date! Full instructions can be found at
For this project, you will need a clear plastic ornament, clear floor wax and
glitter! This is going to be a favorite! You can even personalize these with
a sharpie or stickers and give them as gifts to all your Rett Girls teachers,
therapists and caregivers! Check out the tutorial at
Photo Ornament wFworwviMs. pitoironeutrgerPreeiansttetHr. ceosolitdmab/yoraDertIdYtsgiadi trela/sd, i y /
This is something you can make FOR your Rett Girl or other family HOLIDAY 2017 9
members! You’ll need:
• Clear ornament
• Photo & ribbon
Print a favorite photo and cut out using pattern edge scissors for an extra
touch. Sprinkle some glitter inside the ornament, roll the photo and gently
insert it into the ornament. Re-attach the top of the ornament and tie on a
ribbon for hanging. Check out more tips and a complete tutorial at
R e c ip e s
A HEALTHY OUTSIDE STARTS ON THE INSIDE
PHOTO CREDIT: EVELYN LE
10 HOLIDAY 2017
HOLIDAY 2017 11
F o o d N e t w o r k S ta r
#hangryhousewife Annie Smith
Professional Chef and Rett mom to Mikyla
I’m very passionate about feeding my daughter Mikyla you wil need a blender .
meals that are just as nutritious as what our entire family with a soup setting
eats. I share with families all the time that blending for your
Rett Girl is as easy as ﬁnding a quality blender! It’s with this
thought in mind that we start a series to introduce you to a
blended diet, share the beneﬁts, and walk you through the
steps of transitioning to an easy blended diet routine.
A blended diet is simply taking everyday foods and
blending them, so they can be given through a feeding tube.
It can be very intimidating at ﬁrst (it's much easier to open a
can and think that everything is in there) but don't over
think it. Think about how you eat, how your other children
eat and how your Rett Girl ate before getting a feeding tube.
A blended diet is as easy as preparing a meal and then
blending it into a soup-like texture!
to get it to the best
Got [email protected]?wRifeea.ccohmA. nnie
PHOTO CREDIT: EVELYN LE
12 HOLIDAY 2017
A h e a lt h y a lt e r n at i v e
A blended diet is perfect for those who have food allergies or intolerances and The nutrients that come
those who are looking to add more fat, calories or proteins. Your Rett Girl will from foods are just not
essentially be able to eat the same nutritious foods you serve your whole family. the same as the nutrients
Since you’re in control of the ingredients, you will easily be able to stay that come in a can.
gluten-free, dairy-free, soy-free, etc. if needed. You can easily add more fats Science cannot replicate
if your Rett Girl needs to increase her weight, you can blend raw foods or fresh whole foods. Fruits
cooked foods. You will also have control over whether the ingredients are
organic, the proteins are free-range, whether the dairy is grass fed and the and vegetables are
grains are GMO free. packed with antioxidant
phytochemicals, which are
Many families have switched from formula natural compounds of the
to blended foods and have experienced
wonderful health beneﬁts. It's hard to say plant. There is also a
exactly how your Rett Girl might beneﬁt natural combination and
from a blended diet since each child is
diﬀerent and each family will blend diﬀerent interaction of
food and in a diﬀerent way. But what is clear is that fresh, whole foods are always phytochemicals and
everyone's best source of vitamins, minerals and nutrients. macro nutrients (proteins,
fats and carbohydrates)
Fresh whole foods are far superior in that occurs with whole
nutrients to anything that is processed and foods that can't be
put in a can. One of the most noted beneﬁts duplicated by mixing
of starting a blended diet is that the tube-fed
person digests food better. Of course! That's diﬀerent vitamins
because our bodies were designed to break together.
down whole foods and use its nutrients. Our
bodies weren’t designed to break down chemicals. With better digestion comes a infoIofrumtyaEoCutroi'irocmenpAllaoeaobtkedoihnuTagtaubfrboleeOrn'GFdmeooedrremeddaiiinenngt-sdb,ecpyht: ehck
list of positive outcomes that include:
• Improved weight gain or weight loss as the case may be
• Less gas, bloating, constipation, reﬂux and vomiting after feeds
• Healthier skin, nails and hair
• Far more energy
HOLIDAY 2017 13
Tas t e s o f t h e S e as o n
Annie’s Favorite Recipes
Perfect recipes everyone will love
This stuﬃng recipe is an absolute FAMILY FAVORITE. I bake a cornbread the day before and substitute it
for the white bread in this recipe. It's sweet and savory and even better as leftovers!
New England Sausage, apple and dried Ingredients
cranberry stuffing – from epicurious.com
• 14 ounces white bread, cut
ServingS PREP TIME TOTAL TIME
into 3/4-inch cubes (about 12 cups)
14 45 1 45
• 1-pound sweet Italian sausage,
PEOPLE MIN HOUR M I N
• 1/4 cup (1/2 stick) butter
• 6 cups sliced leeks (white and pale
green parts only; about 3 large leeks)
• 1-pound tart green apples, peeled,
• 2 cups chopped celery with leaves
• 4 teaspoons poultry seasoning
• 1 cup dried cranberries (about
• 4 teaspoons chopped fresh rosemary
• 2/3 cup chopped fresh parsley
• 3 eggs, beaten to blend
• 1 1/3 cups (about) canned low-salt
1. Preheat oven to 350°F. Divide bread cubes between 2 large baking sheets. Bake until slightly dry, about 15 minutes. Cool
2. Sauté sausages in heavy large skillet over medium-high heat until cooked through, crumbling coarsely with back of spoon, about
3. Transfer sausage to large bowl. Pour oﬀ any drippings from skillet. Melt butter in same skillet over medium-high heat. Add leeks,
apples, celery and poultry seasoning to skillet; sauté until leeks soften, about 8 minutes. Mix in cranberries and rosemary.
4. Add mixture to sausage, then mix in bread and parsley. Season stuﬃng to taste with salt and pepper. (Can be prepared 1 day
ahead. Cover and refrigerate.) Mix eggs into stuﬃng.
To bake stuﬃng in turkey:
Fill main turkey cavity with stuﬃng. Mix enough chicken broth into remaining stuﬃng to moisten. Spoon remaining stuﬃng into
buttered baking dish. Cover with buttered aluminum foil. Bake stuﬃng in dish alongside turkey until heated through, about 45
minutes. Uncover stuﬃng and bake until top is golden brown, about 15 minutes.
To bake all stuﬃng in pan:
Preheat oven to 350°F. Butter 15x10x2-inch baking dish. Mix 1 1/3 cups broth into stuﬃng. Transfer to prepared dish. Cover with
buttered foil and bake until heated through, about 45 minutes. Uncover and bake until top is golden brown, about 15 minutes.
14 HOLIDAY 2017
I competed against Chef Manouschka Guerrier on Food Fighters in the Chicken Pot Pie round. I ended up
winning the round and to this day she HATES Chicken Pot Pie, but I also gained an awesome friendship to a
truly remarkable and talented Chef. This ice cream is like vanilla on steroids. Delicious on apple or
Popcorn Blizzard Popcorn Ice Cream with Fleur de Sel Caramel Sauce
From Chef Manouschka Guerrier recipe at FoodNetwork.com
ServingS PREP TIME TOTAL TIME Ingredients
10 30 6 25 • 2 cups vitamin D milk
• 2 cups heavy cream
PEOPLE MIN HOURS MIN • 2 cups sugar
• Prepared movie theatre
ﬂavored buttered popcorn
• 1 vanilla bean (scraped)
• 1/2 teaspoon butter extract
• 2 beaten eggs
Fleur de sel caramel sauce:
• 8 tablespoons butter
• 2 cups packed brown sugar
• 1 cup half and half
• Pinch ﬂeur de sel salt
• 1 tablespoon vanilla extract
1. In a heavy cast iron pot, heat milk, cream, and 1 cup sugar in a saucepan. Cover top of cream mixture completely with prepared
2. When popcorn starts to melt into mixture, sprinkle some more popcorn on top. When the mixture starts to bubble, remove oﬀ of
heat and set aside for 30 minutes so the popcorn infuses its ﬂavor into the cream mixture.
3. Strain popcorn mixture through cheesecloth or a mesh strainer and squeeze the mushy popcorn ﬂavor back into the cream
4. Whisk together the 1 cup sugar, vanilla bean, butter extract, and eggs in a bowl.
5. Still whisking, pour the cream mixture into the egg mixture and pour this back into the cleaned-out pan. Cook until cream
thickens on medium-low heat (You don't want to over cook the eggs because it will leave an egg ﬂavor. Do not leave unattended).
6. With a silicone spatula, scrape vanilla beans oﬀ of the pot and keep stirring all the ﬂavors together. If vanilla beans clump up just
break apart on the interior of the pot. When mixture thickens, remove from heat.
7. Put pot into a bowl of ice water. Let cool completely.
8. Churn in an ice-cream maker according to manufacturer's instructions. Take bucket and put into freezer for at least 5 hours.
To prepare the Fleur De Sel Caramel sauce:
mix butter, brown sugar, half-n-half, and salt in a saucepan over medium-low heat. Cook while stirring or whisking gently for 10
minutes allowing for the brown sugar to dissolve and for the mixture to thicken. Add vanilla and cook until it thickens further. Turn
oﬀ heat and pour sauce into whatever you plan to serve it in. Allow cooling until the sauce is just warm. Serve over ice cream.
HOLIDAY 2017 15
A Crostata sounds fancy, but it's basically a pie without the dish. It’s easier to cut and assemble, and our
family just loves it. If you want to be an over achiever, brush the crust with a beaten egg and sprinkle with
Sugar in the Raw then bake as directed. Serve with ginger whip cream or popcorn ice cream.
Apple Crostata – from foodnetwork.com
ServingS PREP TIME TOTAL TIME Ingredients
6 20 46 For the pastry:
PEOPLE MIN MIN • 1 cup all-purpose ﬂour
• 2 tablespoons granulated or
• 1/4 teaspoon kosher salt
• 1/4 pound (1 stick) very cold
unsalted butter, diced
• 2 tablespoons ice water
For the ﬁlling:
• 1 1/2 pounds McIntosh,
Macoun, or Empire apples
• 1/4 teaspoon grated orange zest
• 1/4 cup ﬂour
• 1/4 cup granulated or superﬁne
• 1/4 teaspoon kosher salt
• 1/4 teaspoon ground cinnamon
• 1/8 teaspoon ground allspice
• 4 tablespoons (1/2 stick) cold
unsalted butter, diced
1. For the pastry, place the ﬂour, sugar, and salt in the bowl of a food processor ﬁtted with a steel blade. Pulse a few times to
2. Add the butter and pulse 12 to 15 times, or until the butter is the size of peas. With the motor running, add the ice water all at
once through the feed tube. Keep hitting the pulse button to combine, but stop the machine just before the dough becomes a
solid mass. Turn the dough onto a well-ﬂoured board and form into a disk. Wrap with plastic and refrigerate for at least 1 hour.
3. Preheat the oven to 450 degrees F.
4. Flour a rolling pin and roll the pastry into an 11-inch circle on a lightly ﬂoured surface. Transfer it to a baking sheet.
5. For the ﬁlling, peel, core, and cut the apples into 8ths. Cut each wedge into 3 chunks. Toss the chunks with the orange zest.
Cover the tart dough with the apple chunks leaving a 1 1/2-inch border.
6. Combine the ﬂour, sugar, salt, cinnamon, and allspice in the bowl of a food processor ﬁtted with a steel blade. Add the butter
and pulse until the mixture is crumbly. Pour into a bowl and rub it with your ﬁngers until it starts holding together. Sprinkle
evenly on the apples. Gently fold the border over the apples to enclose the dough, pleating it to make a circle.
7. Bake the crostata for 20 to 25 minutes, until the crust is golden and the apples are tender. Allow to cool. Serve warm or at room
16 HOLIDAY 2017
I love this salad. It's easy, delicious, and great to have something clean and crisp to break up the decadence
of your holiday menu. I like to add a dash of truﬄe oil because well, I just can't leave anything alone!
Raw Brussels Sprout Salad with Ingredients
Almonds and Parmesan – from Oprah.com
• 1 cup slivered almonds
• 2 pounds Brussels sprouts
• 1/4 cup olive oil or 3
tablespoons olive oil and
1 tablespoon truﬄe oil
• 3 tablespoons fresh lemon juice
• 2 tablespoons ﬁnely sliced
• 1/2 teaspoon salt
• 1/4 teaspoon freshly ground
• 3 tablespoons ﬁnely grated
ServingS PREP TIME TOTAL TIME
6 20 46
PEOPLE MIN MIN
Preheat oven to 350°. Place almonds on baking sheet. Bake 10 to 12 minutes, or until golden brown. Set aside to cool. Meanwhile,
slice Brussels sprouts as thinly as possible. In large bowl, whisk together olive oil, lemon juice, chives, salt and pepper. Add
Brussels sprouts, almonds and Parmesan cheese. Toss until combined.
I want to wish you and your family a wonderful Got questions about recipes
holiday season and hope these recipes inspire you or blended diets? Contact
to get in the kitchen and make yummy eats and
cherished memories all year long! Enjoy! Annie at
[email protected] com
Happy Holidays, Folow Annie on instagram:
Annie hangry housewife
HOLIDAY 2017 17
THE HOLIDAY SEASON IS A PERFECT TIME TO REFLECT ON OUR BLESSINGS
AND SEEK OUT WAYS TO MAKE LIFE BETTER FOR THOSE AROUND US
18 HOLIDAY 2017
O u r B e s t H o l i d ay P r o d u c t s
Holiday Gift Guide
RettGirl’s 9th Annual list of recommended gifts
IHTE R’SE ! 1Beamz
Give the gift of music! Beamz Home is universally
Each year our Holiday Gift Guide designed so that anyone, regardless of age or ability
level, can actively participate in making music.
gets better and better!
Custom horse riding helmet Chooseit! Maker 3
This is a great gift for those who are Create, edit and play personalized
participating in therapeutic horseback riding! learning materials in the home or the
Choose your barn colors or just pick your classroom!
North Face Pancho
432Sweatpantswithfeet The North Face Girls Oso Poncho is
Super cozy, ultra-plush, Sherpa fabric lined perfect whenever the cold winds blow.
5feet to create the ultimate sweatpants that
you'll never want to take oﬀ. Made from super smooth, incredibly
- warm, silky ﬂeece that's so cozy you'll
have a hard time taking it oﬀ of her.
HOLIDAY 2017 19
GI V EMermaidBlanket designate GP2C as
your charity ON
B A C KKeep your Rett child warm, cozy and cute AmazonSmile.com &
GP2C will receive
with this knitted mermaid blanket. Lots of .5% of YOUR
colors to choose from! PURCHASE
8teething toys and protects the hands from Aquapod
109monthsold. - This movable lagoon is like an ocean or pool only
better, because it can be placed anywhere in your
For our younger Rett kiddos that have a tendency backyard. Your Rett child can, roll, lie, sit, make
waves, chase the ﬁsh, and just giggle. Crafted of
to hand mouth, this is a great solution! The sturdy vinyl, it includes 12 colorful “large” ﬁsh
inside but you can add extra!
Munch Mitt prevents the constant dropping of
irritation due to chewing. Designed for up to 12 Echo Show brings you everything you love
about Alexa, but now she can show you things.
Watch video ﬂash brieﬁngs, Amazon Video
content, see music lyrics, security cameras,
photos, weather forecasts, to-do and shopping
lists, and more, all hands-free! For your Rett
child to really get into the action, program her
Princess Canopy AAC device so she can take control!
This decorative canopy envelops -kids in an imaginary
world of enchantment. Hang it from the ceiling over a
play space or a twin bed, or suspend it from a tree limb
for outdoor play. The hideaway features ﬂuttering
ribbons attached to a large, colorful ﬂower canopy and
20 HOLIDAY 2017
THERE’S SOMETHING FOR EVERYONE REGARDLESS OF
AGE OR ABILITY! 11MooninMyRoom
Enjoy the shining beauty of the
12 moon right at home with Moon in My
Room. This realistic moon model
hangs on your wall and lights up to
show the diﬀerent phases of the
moon. It lets your Rett child
experience the awe-inspiring sight
of our moon at any time.
Soap on a rope 13 Crocheted Princess Dress
Fabulously fragrant, creamy, and kind to your Keep warm in this adorable
skin! Your Rett Girl will love being pampered princess dress blanket. It
by this set of two heart shaped soaps on a features holes to slip your
cotton rope. arms through so it looks like
you're wearing a princess
dress while keeping warm.
Who needs a wand? Anyone who curls Chilly Cheeks
up in this cuddly, comfy, whisper-soft,
It’s easy to enjoy all your outdoor activities with a Chilly Cheeks
shaped pillow automatically becomes a
Seat. Simply freeze or microwave your ﬂexible, non-toxic gel
fairy complete with wings!
pack and go. This seat cover cools when it’s hot and warms
when it’s not.
HOLIDAY 2017 21
16 IATW’ SR A P !
Check out our past Holiday gift guides
at RettGirl.org for more ideas!
WeatherBreaker Canopy Dance and Move
This canopy attaches to wheelchairs to protect you
from the sun and rain. It's great for getting to and Get the dance party
from therapy, daily errands, waiting at the bus started by pressing
stop, whenever you need it! BeatBo's tummy or
any of the buttons on
17DreamTents his feet to activate
fun songs, learning
Fun pop up tents that give your Rett child content and dance
their own private world at night. There’s an moves. Record a
under the sea world, a fairy tale forest, a phrase, and he'll
winter wonderland, a space adventure and remix it into his
favorite song. And through all the play, BeatBo
18many more! DreamTents make bedtime introduces letters, colors, counting, music, cause &
eﬀect and much more.
Curved Platform Swing
This curved platform swing
This is not your average beanbag! Hugibo is supports up to four kids. Sit,
the perfect pillow companion for reading, stand, or lie on the comfy fabric
relaxing, or just snuggling. Hugibo will wrap mat and enjoy the ride!
his arms right around your Rett child and if all
the hugs get him a little dirty, just unzip themachine.
20outer cover and throw it in the washing
22 HOLIDAY 2017
MAKE TODAY THE DAY TO LEARN SOMETHING NEW!
HOLIDAY 2017 23
“I love you!”
Say it with your eyes using the Tobii Dynavox I-Series+
The Tobii Dynavox I-Series+ with built-in eye-tracking technology has been specifically designed for individuals with Rett
syndrome, Cerebral Palsy, ALS, and Stroke/Aphasia, who rely on augmentative and alternative communication to make
their voices heard. Discover the power of the I-Series+ with:
• A modern design and integrated eye tracker • Flexible pagesets that allow communication to grow
• Built-in cameras to catch all the special moments • Batteries that last and last
• Access to social media sites to keep connected • And so much more!
• Text messaging to say HI to family and friends
To learn more, contact your local Tobii Dynavox sales consultant and visit tobiidynavox.com.
Power to be You
24 HOLIDAY 2017
2017- A YEAR OF LEARNING & DOING- IT’S TIME TO RAMP UP!
Happy Holidays from all of us at Rett University! benchmarking, so we continue to keep our kiddos moving
As the new year approaches, I cannot help but look back and forward and inspiring a love for literacy that I feel strongly
wonder in awe at all the things that I have learned from all builds sound, solid communication skills. Not to mention,
your kiddos this past year. I have had the pleasure of working helping to keep our kiddos from becoming bored as we
one-on-one with kiddos with Rett Syndrome from around the know there’s nothing worse than one of our kiddos with Rett
world, some that I saw for one hour and others I have worked Syndrome getting bored!
with on a consistent basis.
I have had the joy of watching school teams and parents
I learned so much this year including that it’s time for us all learn about communication and literacy while doing
to ramp up our reading game plan! hands-on activities in Rett University Live workshops in the
I’ve seen so much signiﬁcant literacy progress across the Netherlands, Sweden, Toronto and the US! People all
globe this past year that it really gets me excited but also working together to take the risk of learning something new
makes me very aware that we need to start preparing to do to help our kiddos. When I look out at all those people
more! This experience in 2017 has motivated me to change working so hard, I have to pinch myself! It was just a short
the way I adapt books for our students who need access to time ago that we at Rett University took the risk of putting
read extended text AND still have great screen support. Enter together hands-on workshops and christened them in
an exciting new app, Dream Voice with books created in Word, Scotland and England with all our coaches on board to
printed as a PDF and transferred within Dropbox. Now, this support the adults and kiddos while they learned. This year
might sound a bit complicated, but I want to share we’re it became a staple, as students are learning so much more as
working hard to make it simple and easy to implement for you a result of these types of workshops. (I remember the
and others supporting our students. A new course I’m nerves we all felt during that ﬁrst workshop – I was praying
developing, Guided Reading Part 3, will include step-by-step in the bathroom beforehand and crying in the bathroom
instruction of how to make two new adapted Guided Reading afterwards as it was so amazing.)
books and will also cover strategies for assessment and
HOLIDAY 2017 25
We have seen changes in the way countries educate their children with Rett Syndrome after our workshops. In the Netherlands
and Sweden, girls are now returning to school and not just to day care. Parents are demanding that their daughters are
educated and not just cared for. In the US, even though girls are in school, they are often not fully educated, and parents are
leading the charge with Rett University as a powerful ally to make sure their girls become fully communicative and literate.
We launched a great new product in 2017 at the request of SLPs from around
the world- our new 4-Grid Communication Poster that helps everyone with
doing the important work of modeling every single chance we can get. If you
haven’t heard us yet, WE CANNOT EXPECT OUR GIRLS TO COMMUNICATE
WITH TOOLS WE DON’T USE OURSELVES! With this new tool, we’re helping
others understand the power of modeling symbol based communication and
that communication for our kiddos with Rett Syndrome isn’t just about
putting an eye gaze computer in front of them and telling them to answer
“WH” questions! It’s about ALL OF US immersing ourselves in symbol based
communication language everywhere!
We continue to build our team of Rett U Coaches, and I am starting a study
group for SLPs to make sure that we build more capacity to meet the needs
of all those families and schools that want support. What better way to
empower the girls than to empower those that are working with them on the
frontline every single day? It’s the only way we’re going to create change and
&ŽƵƌͲ'ƌŝĚŽŵŵƵŶŝĐĂƟŽŶWŽƐƚĞƌΞŽƉǇƌŝŐŚƚϮϬϭϳ͕ǁǁǁ͘ƌĞƩƵ͘ŽƌŐ͕>>Z/',d^Z^Zs The change and impact we are experiencing is seeping into ALL with
ΞϭϵϴϭʹϮϬϭϳdŽďŝŝǇŶĂǀŽǆ͕>>͘ůůƌŝŐŚƚƐƌĞƐĞƌǀĞĚ͘dŚĞWŝĐƚƵƌĞŽŵŵƵŶŝĐĂƟŽŶ^ǇŵďŽůƐĂŶĚ complex needs and we’re hearing and ﬁnding signiﬁcant success with other
ŽĂƌĚŵĂŬĞƌĂƌĞƚƌĂĚĞŵĂƌŬƐŽĨdŽďŝŝǇŶĂǀŽǆ͘hƐĞĚǁŝƚŚƉĞƌŵŝƐƐŝŽŶ͘ disorder groups as well. The shift is a clear understanding that ALL students
with complex needs have skills and competencies that are not yet
Order today from discovered and with a change in mindset, access to tools and resources that
the GP2C Shop! gp2c.org/shop work, strategies and techniques that do more than just assess, we’re hearing
of happier, healthier, literate students everywhere!
18X24 (46X61cm) & 24X36 (61X91cm)
So, this year, there is so much to be grateful for but lest you think we are done, wait for 2018! A literacy movement is underway
and we all are being called to learn more, challenge more, partner more and most importantly do more. On behalf of the entire
Rett University team, we are honored to be a part of your life helping and supporting however we can. Remember, our kiddos
with Rett are smart and truly waiting for us to help them. Let’s ﬁgure it out together and truly help these beautiful, bright
students with what they need to be successful.
Stay tuned, we might be around the corner the next time you look up, and we welcome you to join the movement!
Susan Norwell “If not us, who? If not now, when?”
– John F. Kennedy
26 HOLIDAY 2017
PRCMagAdNEW_p2_092517.indd 1 9/25/17 2:03 PM
Helping Others Recover the Power to Move
To learn more, go to www.neurologicalrecoverycenter.com
HOLIDAY 2017 27
a h and Wellness
HAVE YOURSELF A HEALTHY LITTLE CHRISTMAS
28 HOLIDAY 2017
T e x as C h i l d r e n ’ s H o s p i ta l
Focus on your lungs to stay healthy this winter
Marianna M. Sockrider, MD, DrPH, Chief of Pulmonary Clinics
As you probably With winter comes cold and ﬂu season. Many people develop respiratory
know, it’s not entirely infections during the winter months, in part because the cold weather and
possible to avoid all holiday season bring more people together inside. What can be a simple cold
illnesses during the for many people, can be very hard on someone with lung or neuromuscular
winter months, but problems such as our patients with Rett or MECP2 syndrome. Here are a
you can take steps couple of tips to keep everyone healthy during the winter season.
to reduce the risks • Keep hand sanitizer readily available and
and help illnesses encourage frequent hand washing. It is
from becoming very easy to pass on germs by shaking
more severe. The hands, kissing, and most often, germs are
most important passed from the hands. A person who has
thing to remember is an infection touches his or her nose or
to work hard to stay face and then has germs that get passed
from the hands to another person or surface. Many germs live only a short
ahead of it. time on surfaces, but it is a good idea to keep them clean.
• Keep equipment used for breathing treatments or other care clean. Most
can be washed with soap and water or ask your health care provider about
the best way to keep clean.
• Be picky about visitors and insist on good
hand washing. If someone is ill, even a
home nurse, he or she should stay away
or if they must be around your child, wear a mask and wash hands often.
• Avoid large crowds as best you can.
• Use the “bicycle rule” to stay at least 6 feet from someone who is coughing
or sneezing. A cough that a person does not cover can spread germs several
• Children who have been very ill may stay in homebound school status
during the high-risk months, but this should be balanced with home care
resources as well.
• Good nutrition helps ﬁght infection and helps immune systems stay strong.
• Get the ﬂu shot. The inﬂuenza vaccine
(‘ﬂu shot’) is a good idea for everyone
but especially for those who help care
for a person at high risk. Even though
there are already some cases of ﬂu in the
HOLIDAY 2017 29
Continued community, it is never too late to get a ﬂu vaccine. A new shot is needed
each year because ﬂu viruses can change, and extra protection is needed.
Focus on preventing If you have concerns about getting the vaccine, talk to your health care
risk as much as you provider. Many people who even have egg allergy can take the vaccine
can and if there are safely. There are few viruses that we have this protection for and this is
signs of illness, act one virus that can make you very sick.
• Be careful about the use of cough suppressants. They do not often work very well
quickly. While and can cause side eﬀects. It is not always good to suppress a cough which
infections can come indicates mucus needs to come up and out of the body. There are some
at any time, taking Over-The-Counter (OTC) medications that may help promote coughing out mucus
and reduce coughing but it’s
special care in the important to always check with your
winter months is a health professional ﬁrst.
good idea for the • Use special equipment to promote
and assist with coughing. Many
entire family. patients can have an impaired cough
which means they are not strong
enough or cannot coordinate well to
cough up mucus. Some can be helped
with a suction machine to help get out
what is in the mouth and throat. But if
they can’t get it up to be suctioned
out, there are other things to try. Nebulizer (breathing treatments) that have saline
to thin mucus may help. Chest clapping helps get mucus to the bigger airways.
Percussive vests and cough assist devices can also be helpful. You can learn more
about these and whether they can help your child from your health care provider
or lung specialist. Some patients really beneﬁt from having a daily airway
clearance program with treatments 2-3 times per day. And most importantly,
doing treatments as soon as a cough or infection starts helps keep ahead of
• Bacteria can also cause infections and at times take advantage of a person who is
already ill with a virus. Patients with Rett or MECP2 who have seizures can have
more seizures with fever or the stress of illness. Aspiration is a common cause of
bacterial pneumonia. Those who do not swallow well are also at higher risk of
aspiration; more so when sick with a cold or upper respiratory infection as most
cannot handle the extra mucus created during illness.
30 HOLIDAY 2017
Neurological Recovery Center
Power of Movement
Jennifer Zoll, MS, PT, CKTP
It can’t be understated the importance About
of what exercise means to us all. Neurological Recovery Center
However, when you’re faced with
physical challenges that make it Neurological Recovery Center is a neuro-focused
diﬃcult to move, diﬃcult to maneuver outpatient clinic that services adults and children
on your own, how does one help others with neurological disorders. We utilize the most
that need support in getting that done? innovative, physical rehabilitation technology and
How do we promote exercise and have the most robotic gait systems in the world. We
movement for those with physical oﬀer one-on-one individualized care and have
challenges to get the type of movement and exercise they need? created a one place for patients to receive
Over the past two years, we’ve had the pleasure of working and treating four comprehensive physical therapy services including
young ladies with Rett Syndrome do just that- exercise and move! These young massage, acupuncture, yoga, and aquatics. Our
ladies all presented with signiﬁcant physical challenges and fortunately, our patients are our number one priority and we
organization truly understands the “power of movement” and how to leverage continually strive to seek advanced treatments to
technology to get moving! Our goal- get all of our clients out of their chairs, on
their feet and move! further assist in our patient’s recovery.
We know from years of research that exercise and weight bearing activity has To learn more, contact us at
proven to have many health beneﬁts, both physically and mentally. We’ve found
that even in the most extreme cases of physical challenge such as traumatic brain neurologicalrecoverycenter.com
injury and others, exercise and movement not only helps to restore some or ﬁnd us on Facebook and Instagram!
function but carries with it an abundant list of other beneﬁts including but not
limited to: 6913 Camp Bowie #141
• Aiding in digestion Fort Worth, TX 76116
• Improving mood, decreasing anxiety and depression 682-312-7693
• Maximizing muscle mass, improving overall cardiovascular zhealth
• Increasing bone density and reducing osteoporosis HOLIDAY 2017 31
• Release of hormones that promote the muscles ability to absorb amino
acids which help them grow
• Increased energy levels
• Release of serotonin and norepinephrine which helps reduce pain and
decrease feelings of depression and anxiety
• Reduced risk of chronic disease like Type 2 Diabetes, heart disease, and
high blood pressure
• Improvement of skin health by increasing the body’s production of natural
antioxidants that help protect and repair cells
• Stimulation of blood ﬂow that helps the body repair itself
• Improvement in overall brain health and memory by promoting increased
oxygen and blood ﬂow to the brain. Exercise and movement also
stimulates hormones that can enhance regrowth/growth of brain cells.
• Promotes relaxation and sleep, due to energy expended with exercise
and movement with recuperation occurring during sleep.
• Reduction in pain by releasing endorphins and increasing joint
lubrication and joint compression, improving blood ﬂow and oxygen
We know too that all of these have signiﬁcant positive impact on our girls with
Rett Syndrome. So, how do you get started?
Here’s a few ideas to do just that
• Actively participate in physical therapy with a licensed physical therapist About the Author
on an ongoing basis Jennifer Zoll, MS, PT, CKTP
• Work on stretching and weight bearing every day if possible- family
members can learn to help out here throughout the week Jennifer is a practicing Physical Therapist in the
• Check into aquatic therapy in your area. Aquatic therapy is extremely Ft. Worth area. Her primary clinical interests
include neurological recovery, geriatrics, and
beneﬁcial in helping with movement and relaxation and anxiety. It can orthopedic rehabilitation. Jennifer received a BS
be a great way to get quality movement and stretching in. in Rehabilitation with a minor in Psychology
• Use an adaptive stander to get in weight bearing time throughout the from the University of North Texas in 2001. She
week went on to get a BS in Health Science and a MS in
• Take a walk around the neighborhood and use adaptive equipment like Physical Therapy from the University of
assisted walking aids, gait trainers and adaptive bikes to help aid in Kentucky in 2005. Jennifer has worked in skilled
movement and range of motion nursing, outpatient, and home health over the
• Investigate innovative physical therapy technology available in your past 10 years and has served as the Program
area and ask questions about how to be included Director of Neurological Recovery Center for the
• Work with the school to ensure there is adequate adaptive physical
education provided during portions of the school day past 2 years.
• Try to help your girl move as best she can while working towards more
movement and exercise goals for the future
It should be noted here, if exercise and
movement haven’t been a part of daily
and/or weekly routine, it will take
some time to get used to. Be sure to
ease in slowly as you can always build
up endurance and tolerance to do
more over time.
At Neurological Recovery Center, we
promote activities that get the client
involved and moving and use robotic gait systems to provide patients with continuous repetitive
motion, which has shown to improve activity and weight bearing tolerance, range of motion,
posture, and head control. We educate the whole family about the importance of physical movement and interaction at home to keep
everyone engaged and active.
And lastly, never feel like you’re alone or ever think it’s too late to get started. There are many others out there learning daily about new
strategies and techniques that get our physically challenged family members of any age moving. The young ladies we’ve been blessed to
work with prove to us every time just how important their total health and well-being are and when we work together to ensure we
harness the power to move, our girls are healthier and happier.
32 HOLIDAY 2017
HOLIDAY 2017 33
34 HOLIDAY 2017
Together for a cure
Join 75 rett families in florida february 23-25, 2018 at
our 7th annual DISNEY princess race and rettaway
You don't have to be running to enjoy this amazing "Rettaway" weekend! We DETAILS:
need cheerleaders out on the course and volunteers at our booth, too! PLUS,
we have other great things going on designed especially for Rett families: a FEBRUARY 23-25, 2018
workshop with Susan Norwell, a fun Saturday night dinner, and more! This is DISNEY WORLD - ORLANDO, FL
our biggest fundraiser. Help us make it the best ever! WYNDHAM LAKE BUENA VISTA
TELL ME MORE ABOUT THE WEEKEND! 2/22 - 1-ON-1 SESSIONS WITH
This is our 7th year participating in this Disney event. We'd love for you to join us
for this amazing weekend ﬁlled with opportunity to learn and connect with other 2/23 - RETT U LIVE! WORKSHOP
Rett families. From volunteering side by side at our booth to just lounging by the WITH SUSAN NORWELL
pool, there is something for everyone! We have discounts for hotel and park tickets
to share with you, too. Visit www.gp2c.org/princess for more information. 2/23 - 5K RUN
2/24 - 10K RUN AND TEAM DINNER
2/25 - HALF MARATHON
TO LEARN MORE GO TO: GP2C.ORG/PRINCESS
POWER THE FLOWER AT ANY RACE, ANYWHERE!
Team GP2C oﬀers the opportunity for you to spread awareness and raise money for Girl Power 2
Cure by running the race of your choice anywhere you choose! Select from two tiers:
Tier 1: #PowerTheFlower with a Team GP2C race shirt, Team GP2C medal and some other items to
help spread awareness on race day.
Tier 2: Take advantage of our incentive plan where you could earn a re-
imbursement of over $600 to cover your race entry fee, travel and
To learn more go to:
HOLIDAY 2017 35
CureRoadmap to a
If you love a child with Rett Syndrome, you want the answer
to one all-consuming question: Will there be a cure? We are
conﬁdent the answer is YES, and we have a solid plan to get
us there. But we can’t do it alone. We will need the
commitment and the support of Rett families in the US and
around the world. We invite you to learn about our
$33 million, three-year strategic research plan.
R E V E R S E R E T T. O R G / C U R E
36 HOLIDAY 2017
Girl Power in Action!
On August 25th, 2017, hurricane Harvey hit the coast of Rockport, Texas. This slow
moving, Category 4 hurricane caused catastrophic ﬂooding throughout southeast Texas.
Wind gusts topped 100 MPH and pounding waves further escalated the damage, leading
to widespread destruction of homes and buildings. Rainfall totaled over 60 inches in the hardest hit areas, breaking all-time
U.S. tropical cyclone rain records. Many of the homes that weren’t swept away were still completely damaged by the waters
current leaving many homes uninhabitable. Harvey’s long-lived odyssey has come to an end but it’s catastrophic impacts
will be felt for months and likely even years to come.
All the world watched in disbelief as Houston, TX, essentially started to drown. As Americans, we did what we do best and
stepped up to meet the needs as quickly as possible. Those of us in the Rett Syndrome community immediately thought of
our fellow Rett families. Girl Power 2 Cure was eager to ﬁnd those families, reach out to them and assist them however we
could to help them continue to care for their Rett children despite the conditions they were left with.
GP2C reached out to The Blue Bird Circle Rett Syndrome Clinic based
in Houston who helped us get in touch with families that were in need
of immediate assistance. We contacted those families to determine
what their needs were and how we could help. That’s when longtime
supporter, Hang Bower and GP2C board member, Monique Nolk
connected us with Laura Bower and her Girl Scout Troop based in
Bartlett, Illinois. Laura organized her friends, family and network to
help raise the money needed to provide these families with some
essentials to get back on their feet. They had the requested items
shipped directly to the families in Houston and Laura shares, “As a Girl
Scout Troop Leader, it’s always a wonderful opportunity to engage the girls in acts of service. They are learning that they
really CAN make a positive impact on the world around them."
Nothing can replace what was lost due to hurricane Harvey’s wrath, but it is amazing to see how communities have come
together to help those rebuild. We caught some pretty amazing ladies being awesome and in true “Girl Power” fashion, they
made the diﬀerence in some of our families lives!
HOLIDAY 2017 37
Check out our 2017 Ornament and Gift Sets!
A great gift for family, friends and loved ones!
It’s the season of giving and what better way than to spread some cheer than a great gift from the GP2C Shop this
holiday! For yourself, your family AND friends, there’s a little something for everyone – and you’re giving back while at it!
Net proceeds from every purchase help GP2C provide family support, education and research dollars!
So, start shopping today at gp2c.org/shop!
There’s so much
to choose from,
you’l have a hard time
Fil your mugs and tumblers Stay warm this season
with your favorite drink! with our scarves,
sweatshirts and cozy
38 HOLIDAY 2017 blankets!
HOLIDAY 2017 39
GrwoiwthinRg HettoSpe fyonrdGromire!ls WWW.RETTGIRL.ORG/GUIDE
Wfteaehdmeuericdaliaueptsciosa,rttsse & Wfsaeumpoipflyofertr tWhee icnosmpmiruenity frWiensedefaaurnccduhrteo
RETT GIRL HOLIDAY MAGAZINE © COPYRIGHT 2017. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED
40 HOLIDAY 2017