Rett Girl Magazine - Holiday 2016

Ret Holiday
2016

Meet our Million $ Girl PHOTO CREDIT: KARENHALBERTPHOTGRAPHY.COM
Contest Winner, Blakely!

www.gp2c.org/blakely

NEW THANKSGIVING TRADITION
HOLIDAY RECIPES, BOOKS & APPS
OUR 8TH ANNUAL HOLIDAY GIFT GUIDE
ADORABLE SALT DOUGH ORNAMENT DIY
PROTECTING HER SMILE

“RETT GIRL MAGAZINE HOLIDAY 2016” © COPYRIGHT 2016 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

6 week | $309,261 | 1,583 donor | 68 team DREAM

an yo ! BIG

Girl Power 2 Cure participated in the
Revlon LOVE IS ON Million Dollar
Challenge September 14th - October
26th to raise awareness and research
funds for Rett Syndrome.

We nished in 6th place out of 150
charities! We are so thankful for
everyone who rallied behind our girls!

We’d like to especially thank the girls
pictured on this page who were the
top 10 fundraisers for our cause.

Thank you for Dreaming Big with us!

Sarah Ysa Blakely

Tessa Juliana Macy

Michelle Sophie Emma

2 HOLIDAY 2016 Ashley

12 Days Of Christmas with Rett Syndrome

Bridget and her girls, Annie and Grace On the first day of Christmas, the good Lord gave to me: a child with
Rett Syndrome.
It sort of sneaks up on us every year right? School starts, fall sports, On the second day of Christmas, the good Lord gave to me: a heart full
Halloween and then BAM! All of a sudden it’s holiday season and we of love for my child with Rett Syndrome.
wonder where the time went. I LOVE the holidays! Snuggling up in On the third day of Christmas, the good Lord gave to me: an ache in my
warm blankets, a little more family time, a little slower paced (for our heart and a heart full of love for my child with Rett Syndrome.
family at least), the food, oh, the food! Not to mention the parties, On the fourth day of Christmas, the good Lord gave to me: a tear in my
excitement and gifts! There are a lot of emotions that come with the eyes, an ache in my heart and a heart full of love for my child with Rett
holidays but in choosing to look for the hope rather than the hurt we Syndrome.
can turn any time into a joyous time. On the fifth day of Christmas, the good Lord gave to me: an unsuspect-
ed strength for the tear in my eyes and the ache in my heart and my
Once again this year we looked high and low for some amazing gifts to heart full of love for my child with Rett Syndrome.
include in our Holiday Gift Guide! We know so many parents have On the sixth day of Christmas, the good Lord gave to me: a ray of hope,
stress over finding gifts for their Rett Girls so this year and every year an unsuspected strength for the tear in my eyes and the ache in my
we work to relieve that stress by creating a gift guide that is fun, practi- heart and my heart full of love for my child with Rett Syndrome.
cal, and functional with something for every age and price range. On the seventh day of Christmas, the good Lord gave to me: a sense of
humor, a ray of hope, an unsuspected strength for the tear in my eyes
As this year starts to wind down and the New Year approaches, let’s and the ache in my heart and my heart full of love for my child with Rett
remember just how blessed and grateful we are. Let’s focus on the Syndrome.
hope, not the hurt. Let’s choose the happiness over the sadness and On the eighth day of Christmas, the good Lord gave to me: supportive
let’s make this the best season yet!! Wishing you, your Rett Girl and friends, a sense of humor, a ray of hope, an unsuspected strength for
your entire family the very happiest of holidays! the tear in my eyes and the ache in my heart and my heart full of love
for my child with Rett Syndrome.
Bridget MacDonald On the ninth day of Christmas, the good Lord gave to me: remarkable
Rett Girl Coordinator doctors & therapists, supportive friends, a sense of humor, a ray of
[email protected] hope, an unsuspected strength for the tear in my eyes and the ache in
heart and my heart full of love for my child with Rett Syndrome.
KarnisdtWinilw, iathndhehruscbhialdnrdenBBil rynn On the tenth day of Christmas, the good Lord gave to me: an apprecia-
tion of small accomplishments, remarkable doctors & therapists,
supportive friends, a sense of humor, a ray of hope, an unsuspected
strength for the tear in my eyes and the ache in my heart and my heart
full of love for my child with Rett Syndrome.
On the eleventh day of Christmas, the good Lord gave to me: a sense of
pride and courage, an appreciation of small accomplishments, remark-
able doctors & therapists, supportive friends, a sense of humor, a ray of
hope, an unsuspected strength for the tear in my eyes and the ache in
my heart and my heart full of love for my child with Rett Syndrome.
On the twelfth day of Christmas, the good Lord said to me: Reach out
and share your sense of pride and courage, your appreciation of small
accomplishments, your remarkable doctors & therapists, your support-
ive friends, your sense of humor, your ray of hope, your unsuspected
strength for the tear in your eyes and the ache in your heart and your
heart full of love for your child
with Rett Syndrome.

Be Brave this Christmas! HOLIDAY 2016 3
Power On,
Kristin Hileman
Family Support Team Leader
[email protected]

Rett
GIRL

HOLIDAY

Magazine

“The Holiday season is a perfect time to reflect on our
blessings and seek out ways to make life better for
those around us.”

W e ’ v e b r o k e n o u r H o l i d ay
Rett Girl MAGAZINE down into

s i x fa b u l o u s cat e g o r i e s .

Click the category to navigate to each section

5 Winter ACTIVITIES Your Rett Girl will love all the creative
10 HOLIDAY Recipes things to do this season
Delicious dishes for all the festivities

17 HOLIDAY GIFT GUIDE Our 8th Annual Gift Giving Guide

22 EDUCATION New apps and great e-books to keep
learning all season long

27 Health and Wellness Protecting Her Smile:
Dental Health for our Rett Girls

4 HOLIDAY 2016 30 Hope for the Holidays GP2C and our partners share inspiration

Rett
GIRL

HOLIDAY
Activities

WHEN I LOOK AT A SNOWFLAKE YOU COME TO MIND
BECAUSE JUST LIKE A SNOWFLAKE YOU ARE ONE OF A KIND

HOLIDAY 2016 5

Home made gifts for everyone!

Salt Dough ORNAMENTS

There are so many ways to make these unique!

All kids love making gifts for friends, neigh- Variationsand
bors, brothers and sisters, EVERYONE! Get Decorations
your Rett Girl involved with making these
great salt dough ornaments. There are so many Use a straw to put a hole in the top of the ornament
ways to decorate them. Add an educational Add cinnamon to the recipe for a great added holiday smel!
component by working on colors, shapes and Use food coloring in the dough and skip the painting! Tip:
even spelling. food coloring fades with baking so make sure to use enough.
Fabric markers are great for decorating
Ingredients: Squeeze glitter glue on ornament and smear with
finger for a sparkly sheen
4 cups all-purpose flour Use puffy paints to decorate - it mimics the look of icing.
1 cup salt Mod Podge and spray polyurethane are great for
1 ½ cups warm water preserving al the hard work
Use string, ribbon or twine as a way to hang
Directions: your ornament on the tree

1. Preheat oven to 300 degrees F

2. Mix flour and salt well. Gradually add warm
water, stirring with a large spoon. Finish
Qmixing with hands. Knead until soft and
pliable.

3. Roll out onto floured surface about 1/8 inch
thick. Cut shapes with cookie cutters. Place
on cookie sheets. With a toothpick make a
hole in the top of the ornament for
threading string.

4. Bake at 300 degrees F until hard,
about 1 hour 15 minutes.

5. Now comes the fun part! Time to paint
and decorate!

Check artfulparent.com

6 HOLIDAY 2016

Thankerchief

A Thanksgiving Game

Get your Rett Girl in on the fun!

Thankerchief Game wytio“htcthuiGahn(rerWniagBredvnWl“hucaTt’ekstrhouathh“hreeeAcrygttwaeicTrdohisorhrtcnirhhrmtahenhtptkaetaenheeeihyonep”nnekriy.oaregsu)kfietcynuatm”eteoprhoekr’tcwrolki:oelufrhcleoieuhohdotsfidomleh,!etisro)kofetfanoohTo”,ipfannnshrtar(,Gtkh.othtenfno(sfaoemaaHkuoopmmnyapelbaelsodareofvoiobhcloukyeenydi–heerregmeypiiHrtrRcenmcmhikahoefcehian,natotwunsiautoceclsdaddrrkwifttlsoera)oisscsnsusymaoawl.Pg.nesrysulei.dtaeth,sPahcyvyatdaheerossyersausyofyagoosorornohneueernedciates

New Year’s Eve

Party Hats!

Get into the fun!

There’s something so exciting about New Year’s Eve! A whole new
year in front of you, a clean slate, new goals, new opportunities, and
new hope! You and your Rett Girl may not make it all the way to
midnight but these hats will get you in the mood to celebrate! What
you’ll need is party hats, contact paper and a circle hole punch.
With the hole punch cut out a bunch of contact paper confetti. Peel
the paper backing off of the dots and position them on the hats.
For variations use different cut outs, and lots of colors
and prints. Have your Rett Girl choose what goes
on her hat!

HOLIDAY 2016 7

Head out the Door!

HOLIDAY DIY

Make one ornament per week from now until Christmas!

Cotton Ball Snowman

With just a few cotton balls, some buttons and some other
things you probably already have laying around the house
you can make these super cute snowmen!

kinderart.com

Scrabble Tile Ornament

Let your Rett Girl pick out her favorite song or her favorite
phrase and use Scrabble tiles to turn her words into an
ornament!

CountryLiving.com

K-Cup Snowman Hats

Here’s something you can do with all those empty k-cups!
Paint them black and let your Rett Girl pick out all the fun
accessories to decorate them!

Pitterandglink.com

Pinecone Map

Let your Rett Girl choose her favorite place to vacation, get

the map of it and cut it into leaf shapes, now glue it onto a

Styrofoam ball. What a great keepsake or give them away as

gifts! turtlesandtails.blogspot.ca

8 HOLIDAY 2016 Find more DIY’s for al year long at
rettgirl.org

diyonthecheap.com

Head out the Door!

Community Outings

Get out there and into the Holiday Spirit!

More Adaptive Skiing Parades
Ideas!
Yes, we said skiing! There are ski There are Christmas parades going
1. Visit your local museum resorts around the country offering on all over the place! Check your
or science center ski experiences for those in wheel- local community for one in your
chairs. Challenge Mountain in Mich- area. Make sure to bundle your
2. Take a dip at a local igan offers FREE lessons and equip- Rett Girl up tight!
indoor pool ment for all people with disabilities
and their families. cmski.org Ice Skating
3. See a Tree Lighting. Visit
topeventusa.org for Christmas Markets Take your Rett girl for a spin around
some great ones near the ice rink this year! Visit a local
you! Each year more and more towns and outdoor pond OR contact an indoor
cities are hosting German-style rink and ask if they will allow a
4. Have family game night. Christmas markets, Christmas wheelchair on the rink – this way if
PicWits is a great one to villages or “Christkindlmarkt’s.” The she gets cold you can just come off
try! markets combine great food, music the ice and into the warm indoors.
and entertainment in an open air
event. Check out a list at Share the Gift of Light
christmasmarkets.com
This year you can easily join a
Best of Broadway Hanukkah celebration wherever
you are. Simply use this handy tool
Enjoy an amazing show this Holiday to locate the Hanukkah events clos-
est to you: chabad.org
season! The Best of Broadway brings

Broadway musicals to a city near

you! Check out their website and pick

your city to see the upcoming sched-

Csheencskoryyo-ufrrileoncdallymSaal nftoar a ule. broadwayacrossamerica.org
visit!

HOLIDAY 2016 9

Rett
GIRL

HOLIDAY
R e c ip e s

COOKING WITH LOVE PROVIDES FOOD FOR THE SOUL

10 HOLIDAY 2016

Recipes

Gluten-Free Foods

Perfect recipes for the holidays that everyone will love

Turkey is a staple at a Thanksgiving feast but it can be intimidating to be the one cooking the main course
at such a special time. Not to worry, we’ve got you covered with a great recipe that’s sure to please!

Brinded – Herb Roasted Turkey – from Oprah.com

ServingS PREP TIME TOTAL TIME Ingredients
For the brine:
12 24-36 5 • 1½ cups red wine vinegar
• 1 cup whole coriander seed
HOURS HOURS • ¾ cup coarse sea salt
• ¾ cup kosher salt
DIRECTIONS • ½ cup garlic cloves peeled

Brine: Pour 6 quarts water into a large stockpot. Add vinegar, coriander, both salts, garlic, mustard and smashed
seeds, peppercorns, allspice, juniper, cloves, bay leaves, celery, onions, and carrot. Bring to a boil, • ½ cup yellow or brown
then reduce heat and simmer, stirring once or twice, for 5 minutes. Stir in parsley, rosemary, and
thyme and set aside to let cool completely. mustard seeds
Turkey: Arrange turkey in a large brining bag inside a deep pot or a very big bowl. Pour cooled brine • ½ cup whole black
over turkey, seal bag, and put in refrigerator. Chill for 24 to 36 hours, rotating the turkey once or
twice for even brining if not completely submerged. peppercorns
Preheat oven to 450°. Remove turkey; discard brine and bag. Rinse turkey thoroughly, pat dry. In a • 2 Tbsp. allspice berries
medium bowl, stir together mayo, sage, thyme, garlic powder, fennel seed, salt, and black and white • 2 Tbsp. juniper berries
peppers. Spread evenly over turkey, inside and out. Tuck wing tips behind turkey and use butcher’s • 2 Tbsp. whole cloves
twine to tie the legs together snugly. Arrange on a wire rack in a large roasting pan. • 5 dried bay leaves
Roast turkey 30 minutes; then reduce oven temp to 350°. Continue roasting 2 to 2½ hours more, • 5 ribs celery, roughly chopped
basting every 30 minutes and tenting the turkey with foil if skin begins to darken too quickly, until • 4 medium white onions, peeled
deep golden brown and a meat thermometer inserted in the thickest part of the thigh registers 155°.
Set turkey aside to let rest 30 minutes, carve, and serve. and roughly chopped
• 1 large carrot, peeled and

roughly chopped
• ½ bunch flat-leaf parsley

sprigs
• ½ bunch rosemary sprigs
• ½ bunch thyme sprigs

For the turkey:
• 1 (12- to 14-pound) whole

turkey, giblets and neck
removed, rinsed well
• ½ cup mayonnaise
• 1 Tbsp. dried sage
• 1 Tbsp. dried thyme
• 1 tsp. garlic powder
• 1 tsp. ground fennel seed
• 1 tsp. kosher salt
• ½ tsp. ground black pepper
• ½ tsp. ground white pepper

HOLIDAY 2016 11

12 HOLIDAY 2016



True Italian risotto uses as its base Arborio rice, a short-grain white rice that has a high rice gluten content. Don't worry: rice
gluten is not the same thing as the gluten that bothers us. The high rice gluten content in the Arborio rice gives risotto its
creamy, rich consistency and texture.

Ove n R i sot to With Ka l e Pesto – from BonAppetit.com

ServingS PREP TIME TOTAL TIME Ingredients
• ½ cup walnuts, coarsely chopped,
4 40 45
divided
MIN MIN • 4 tablespoons olive oil, divided
• 1 medium onion, finely chopped
• 1 cup arborio rice
• Kosher salt and freshly ground

black pepper
• ½ cup dry white wine
• 1 small garlic clove
• 1 cup (packed) fresh parsley leaves
• 3 tablespoons chopped fresh chives
• 2 cups torn Tuscan kale leaves,

divided
• 2 tablespoons unsalted butter
• 3 ounces Parmesan, finely grated

(about 2 cups)

DIRECTIONS

• Preheat oven to 350°. Toast walnuts on baking sheet, tossing occasionally, until golden brown, 8–10 min.
• Meanwhile, heat 2 Tbsp. oil in a large saucepan over medium heat. Add onion and cook, stirring often, until softened, 5–8

min. Stir in rice; season with salt and pepper. Cook, stirring, until some grains are translucent, about 5 minutes.
• Add wine, bring to simmer, cook until pan is almost dry, about 3 minutes. Add 2 cups hot water; season with salt and pepper.

Bring to simmer, cover, and bake in oven until liquid is mostly absorbed but rice is still starchy in the center, 15–18 min (it
should be undercooked).
• Meanwhile, pulse garlic and half of toasted walnuts in a food processor until very finely ground. Add parsley, chives, half of
kale, remaining 2 Tbsp. oil, and ¼ cup cold water; process until smooth; season pesto with salt and pepper.
• Set saucepan over medium heat. Add ¾ cup hot water and cook rice, stirring constantly, until it is tender and sauce is
creamy, about 3 minutes. Stir in pesto, butter, three-quarters of Parmesan, and remaining kale. Adjust consistency with
water, if needed; season with salt and pepper. Serve topped with remaining walnuts and cheese.

14 HOLIDAY 2016

G lu te n - F r e e S u fga niyot – F rom G lutenfreeBay.blog spot.com

ServingS PREP TIME TOTAL TIME Ingredients
• 2 eggs, beaten
12 30 45 • 2 cups buttermilk
• 1/4 cup butter, melted
MIN MIN • 5 cups Rice Flour Mix*
• 1 cup sugar
• 2 tsp baking soda
• 1 tsp baking powder
• 2 tsp salt
• 2 tsp xanthan gum
• 1 tsp nutmeg
• 1/2 tsp cinnamon
• 1 beaten egg, set aside
• 1/2 cup sugar, set aside in a bowl

Raspberry or strawberry jelly
(seedless)

*Rice flour mix:
• 3 cups white rice flour
• 3 cups brown rice flour
• 2 cups potato starch (not flour)
• 1 cup tapioca starch

DIRECTIONS

Beat 2 eggs, buttermilk, and melted butter in a large bowl with a whisk.
Combine dry ingredients in a separate bowl. Fold slowly into the wet ingredients, mix with a wooden spoon. When the ingre-
dients are mostly combined, use your hands to knead a few times to make sure the ingredients are fully incorporated.
Let the dough rest for 15 minutes. Sprinkle extra rice flour mix on your countertop. Roll dough to 1/4 inch thick. If dough is
sticky, work in more rice flour blend.
Heat 2 inches of canola oil until very hot (375° F).
Use a biscuit cutter or jar with approximately 3-inch diameter to cut disks out of the dough. Place 1/2 teaspoon of jelly in the
center of one disk. Brush the beaten egg you've set aside around the outer edge of the dough. Place a second disk of dough
on top, and use your fingers to crimp the edges until they are sealed. Repeat until you've used up all the dough.
Carefully place sufganiyot in hot oil with a slotted spatula. Cook until very brown on one side. If necessary, turn the donut
over and brown on the second side. Remove from oil and place on a plate lined with two layers of paper towel or brown paper.
While warm, roll sufganiyot in the bowl of sugar to coat.
Serve while warm.

neixttcgoHuuSlidadevebne: [email protected]?gr

HOLIDAY 2016 15

Girls Just Wanna…Eat Real Food!

Real Education.
Real Support.
Real Food.

Real Partnership.

JulCiOe -&FOTUoNnDEyRBS, oRmEAbLaFcOinOoD&BLSENoDnS AJ IngrFidOUHNaDrEdRin, GgIR&L PDOaWuEgRh2tCeUrRSE arah

Born from a mom & dad’s love for their tube-fed son, Real Food Blends
makes 100% real food meals for people with feeding tubes. No corn
syrup or preservatives, just real ingredients to nourish your body and

soul. We’re excited to partner with Girl Power 2 Cure and Rett University
to provide better education, support and nutrition options to all of you

living with Rett Syndrome and a feeding tube.

LEARN MORE OR ORDER AT

RealFoodBlends.com/RettGirl

16 HOLIDAY 2016

Rett
GIRL

GHiO LGI DuAiYd e

THE JOY OF BRIGHTENING OTHER LIVES, BEARING EACH OTHERS’
BURDENS, EASING OTHER’S LOADS AND SUPPLANTING EMPTY HEARTS AND
LIVES WITH GENEROUS GIFTS BECOMES FOR US THE MAGIC OF CHRISTMAS

W.C. JONES

HOLIDAY 2016 17

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.org’s 8th Annual list of recommended gifts

HI TE R’ SE !Each year our Holiday Gift Guide Rainbow Maker
This rainbow maker uses the
gets better and better! sun to fill a room with
rainbows. Like an active
1Word Discovery Game piece of art, the piece
revolves when powered by
This is a great educational game that direct sunlight, catching and
includes a word board and letter cards thatrefracting pretty bands of
you can flip. It can teach your Rett Girl color. The best part? No
how to complete words and aid in spelling, batteries necessary!

3 2readingandwriting. VISIT Deep Sea Sand Art

4 PRROETDTOUTCLGTIINSRKLO.TONORLIGNEFloorDrum This sandscape is an interactive,
ever-changing, mesmerizing and versatile
This colorful, 10-inch kid's floor-tom is a great way art pieces. Watching them evolve with a
to encourage your Rett Girl to use her hands! Its new creation with each turn will visually
compact size makes it just right for classroom drum stimulate your Rett Girl.

5circles, and it can be played with hands, the includ- Twilight Turtle
This plush toy transforms any room into a starry
night sky to help comfort children to sleep. He
projects a magical constellation of stars onto
bedroom ceiling and walls in three soothing color
options.

ed mallets, or drumsticks.

18 HOLIDAY 2016

designate GP2C as M is for Me book
your charity ON This is a true story about the Rett Girl in
your life! It’s a personalized ABC book
AmazonSmile.com & filled with illustrations of positive person-
ality traits that inspire.
GI V E GP2C will receive
.05% of YOUR Rainmaker
This is no ordinary rainmaker! This one makes
PURCHASE
colorful movement when the inside segments
B A C KAvoseedo twirl and spin and the color beads fall through
the tube!
6The Avoseedo is the perfect tool for your Rett Girl to
Butterfly Puddler
grow avocado trees at home: it is a small plastic There's nothing quite like a
gadget with a hole where you can insert an avocado garden aflutter with wild
pit. It increases the success rate of the avocado butterflies in the afternoon
sun. Attract your neighbor-
germination. Not only will your hood beauties with this
Rett Girl be learning about sand-and-water puddler,
growing plants but she can designed to hold on to
take pride in eating the natural minerals after water
healthy fruit it evaporates. Your Rett Girl
will love all the beautiful
P7RROETDTOUTVCLGITIISNSRIKLTO.TONORLIGNE 8produces. visitors!
DIY Nail Polish
What girl doesn’t LOVE nail polish? This kit has HOLIDAY 2016 19

9everything you need to start mixing your own

custom color polishes including eight colors you
can mix and match with. the help of blending tools
and funnels, creating a chic, personalized bottle of

10lustrous lacquer is at your Rett Girl’s fingertips!

GIFTS 4

EVERY AGE!
THERE’S SOMETHING FOR EVERYONE REGARDLESS OF

AGE OR ABILITY! Aurora Smart Lighting Panels
Let your Rett Girl create a signature
Snap Scene scene in your home with this set of
Make communication a snap! interlocking LED panels that snap
Take a photo and tag it with together to form an infinite number
recordings to let your child of geometric designs. The colors are
communicate on the fly. Snap also completely customizable!
Scene turns everyday moments
into chances to learn to Charm It
Inspire your Rett Girl to express her
121131communicatenaturally. individuality through creativity! A
charm bracelet is the perfect accessory

and she can add to it for years to come

R E T TVGIISRILT. O R GAsics Kids Gel-Contend Shoes every time she tries something new.
T O L I N K T OWhat beats new kicks? Your Rett
Squigz
Girl is sure to love these shoes Squigz are fun little suckers! Apply pressure to
two Squigz. Air rushes out and the fun rushes in!
P R O D U C T S O N L I N Ethat come in several differentConnecting to each other and to any solid,
non-porous surface - Squigz are a species all
colors and there’s a bonus, they’re their own. They flex. They stick. They suck
orthotic friendly! people into creativity AND they’re great for
helping your Rett Girl use her hands!
141520 HOLIDAY2016

16 IATW’ SR A P !

CHECK OUT OUR PAST HOLIDAY GIFT
GUIDES FOR MORE IDEAS HERE!
Chewbeads
Chewbeads are safe, non-toxic, silicone chewable
jewelry. This isn’t your average teether though,
these are super cute pieces of jewelry that your
Rett Girl will be proud to wear!

VISIT
RETTGIRL.ORG

TO LINK TO

17PRODUCTS ONLINE
PC eye mini and Rett Bundle

Give your Rett Girl the gift of communications! The Tobii Animated Butterfly
Dynavox PCEye Mini is the smallest and most robust eye Ever dreamed of keeping a butterfly as a
tracker on the market. It gives pet? Now you can! This lifelike butterfly is
individuals greater freedom like nothing you have ever seen. Unwrap
and independence to access the glass jar and activate the switch
the world around them, located inside the lid. Now all you need to
including surfing the web, do is tap the lid to watch the “butterfly”
connecting online, fly around in a surprisingly lifelike way.
playing games, and using
environmental controls Cinema Lightbox
to turn on the lights or Back- lit like a real marquee this lightweight,
TV. In addition you’ll get battery operated design offers 3 slotted lines
Susan Norwell’s popular

1189CommunicationFlipBooks!
Hanging Chaise Lounger to accommodate the included letters and
You might have to fight your Rett Girl for this ultra symbols. Perfect for your Rett Girl’s bedroom!
comfortable lounger with heavy-duty powder Bonus! Work on spelling and writing as she
coated metal frame and all weather-resist fabric. decides what to write!
Keep it inside for those cold days where swinging
HOLIDAY 2016 21
20in the park is out.

Rett
GIRL

HOLIDAY
Educatio n

EDUCATION IS THE MOST POWERFUL WEAPON
WHICH YOU CAN USE TO CHANGE THE WORLD.

NELSON MANDELA

22 HOLIDAY 2016

Let t h e Li b r a ry C o m e to Yo u

Holiday Books

Three Books Worth Reading This Holiday Season

How the Grinch Stole Christmas! A Charlie Brown Christmas Oskar and the Eight Blessings

by Dr. Seuss by Loud Crow Interactive Inc by Richard and Tanya Simon

Check out the app of this classic holiday "Isn't there anyone who knows what Oskar is a lovely and moving Hanukkah
book! This book has narration options Christmas is all about?!" Help Charlie Brown, story that can work beautifully as an
such as text highlighting and recorded Snoopy, and the entire Peanuts gang as anytime story. Husband-wife authors
audio where a child can choose: “read to they struggle to find the true meaning of Richard and Tanya Simon set the book
me, read myself, or auto play.” A great Christmas. Peter Robbins, the original voice during Hanukkah in 1938, when Oskar's
way to practice reading skills and just a of Charlie Brown, narrates the rebirth of the sent to New York by his family to escape
fun holiday classic to read over and over! 1965 animated classic as an interactive the Nazis. The disturbing history is handled
The $3.99 app can be found for storybook complete with original dialogue, gently in the text and art, in a prologue that
Android at play.google.com or on itunes. digitally remastered illustrations, animation, shows Oskar and his parents basking in the
and music. glow of their holiday menorah in a time
reaCdfhoearciknabtoooliuostkDt giaosfonndoebydowromakeostavcithdeusstrhn.ecedommovie! Play Schroeder's piano, finger paint with the before "the Night of Broken Glass." And
cahtebckaourtetfhoeoHtboliodoakysg.cifotsm gang, and go caroling with the Peanuts Simon's author's note at the end goes into
choir. Participate in the Spectacular more detail about that night, when the Nazi
Super-Colossal Neighborhood Christmas paramilitary forces and non-Jewish citizens
Lights and Display Contest to unlock smashed the windows of Jewish-owned
decorations for your very own Charlie Brown shops, buildings, and synagogues. The
Christmas Tree! With something to discover message is hopeful, as Oskar is helped on
on every page, this is one interactive his journey by the strangers he encounters,
Peanuts adventure you won't want to miss and kindness and connection are shown to
this holiday season!! The $5.99 app can be transcend religion, race, age, and class. You
found at itunes.apple.com or play.google.com can purchase this book at Amazon.com

HOLIDAY 2016 23

Fun and Interactive Learning

Holiday Apps

This Holiday Combine Education and Holiday Traditions!

Smart Apps for Sleeps to Christmas Hanukkah Story
Special Needs
Who doesn’t get anxious about This is an interactive storybook that
SmartAppsForSpecialNeeds.com Santa’s impending arrival? Sleeps your Rett Girl can enjoy partic-ipating
is a fantastic site to check out to to Christmas allows you to choose in. It presents the Jewish events of the
find the perfect app for your Rett from a variety of drawn characters Holiday in an amus-ing manner while
Girl. They review thousands of that hold a sign that counts down collecting Hanuk-kah symbols to fill
apps and give you a detailed the nights, hours, minutes and their cabinet. Hanukkah Story is an
explanation so you know if it’s seconds to Christmas. Those who amazing story about the Jewish
right for your child before you are comforted by routine will love legacy. How the Jewish people in
purchase. Their reviewers have being able to simply click the app Israel fought and won against all odds.
experience with children from and see how many more sleeps they There’s also a prayer guide that lights
birth through high school, have until the big man arrives. You the Meno-rah and recites the
including children with special can even shake your iPhone or iPad Hanukkah prayers easily. The Prayers
needs, in both professional and to make sleigh bell noises. tab allows you to choose to read in
parental capacities. They even itunes.apple.com or play.google.com English or Hebrew (as well as an
categorize the apps they review English translator to the Hebrew
so if you’re looking for More Holiday Dinner prayers wording). This tab is proven to
something in particular it will be make more kids and adults feel
easy to find. Subscribe to their Kids can plan a virtual meal for comfortable and confident to light the
free special needs apps alert and Thanksgiving, Christmas or Hanuk- Menorah! There’s also trivia, karaoke
get updates via email! kah! They can mix, bake and even and dreidel game! itunes.apple.com
carve the turkey, ham, roast or lamb. or play.google.com
cheactkroeutttmgoirrel.oarpgps After they make their holiday meal
they can go from the kitchen to the
to the dining room to serve up a
plate – as little or as much as they
want! Your Rett Girl will have a lot of
fun creating the perfect meal and
you can get other family members
involved to help your girl with
activating the iPad with all her
choices. itunes.apple.com

24 HOLIDAY 2016

A Dream Turned Into Reality

Rett University Grows

Beyond Borders and Expectations

By Susan Norwell, MA Special Education and Rett University Co-Founder

2016 SNAPSHOT

• We’ve grown to over 790 Rett U students with over 400 course registrations this year.
• We expanded our scholarship program to be available internationally and supported students in Canada, UK, Guatamela, Mexico, Costa Rica

and the US.

• We grew to 12 course offerings with more to come by end of the year.
• Led over 20 Rett U Live! sessions impacting over 1,000 total participants including Speech

Therapists, educators, family and caregivers.

• We provided direct services to over 30 school districts and development centers

providing training and support along with in-classroom coaching and modeling with
tools and resources.

• We have guided, supported and coached over 200 families.
• We announced the addition of four incredible professionals committed to serving our

families, schools and communities as Rett U Coaches.

• We led Rett U Live training sessions in over six countries including. US, Canada, England, Scotland,

New Zealand, Australia, Netherlands, including our first Rett U Communication flip books translated into Dutch.

When I decided in 2013 to partner with Girl Power 2 Cure, Inc. to launch Rett University,
(RettUniversity.org) I was excited beyond belief about the positive impact we could have on
every student with Rett Syndrome. That impact was aimed specifically to help those
supporting individuals with Rett Syndrome learn what they needed to provide the right
access to communication, robust language and the literacy skills to make a difference in
their lives. What I dreamt about in 2013 cannot compare to what we’ve accomplished this
year and the work we have ahead.

Our impact is broad reaching and we are hearing incredible stories from all over the world
how our work is empowering EVERYONE impacted by Rett Syndrome. All of this happened
because of the dedication and commitment from our instructors, coaches and support staff
who are working hard every day.

I acknowledge the work is challenging, but our students with Rett Syndrome are worth it.
I’ve been blessed to experience a student’s eyes light up when they use an eye gaze device
for the first time and had the ability to share with me what they were thinking. The sense of pride they have proving they can spell, construct
sentences and get out what they want to write about utilizing our ABC and Core Word Flipbooks. I tell you, this work is humbling and completely
where I want to be now and in the future. I consider it my life’s work and I am thankful for those that have joined this journey with us.

Our work, however, is far from being complete. We are in the midst of a movement to help the world see and understand that students with Rett
Syndrome are bright, capable and intelligent. When they are given access to the tools, resources and communication partners that truly
understand them, they thrive! We have a duty and obligation to make this one of our key efforts for 2017 and beyond. I too pray and hope for
treatments and a cure that will rid our kiddos with Rett Syndrome of all that limits them. Until then, WE are the ones who hold the power to make a
difference in their lives today and tomorrow.

Thank you to all who have taken on the task to do more and learn more. We are committed as ever to keep offering full and total support to
everyone impacted by Rett Syndrome. Wishing all of you a very blessed Holiday ahead. I for one feel very blessed to be a part of the Rett
Syndrome community. Thank you for sharing your kiddos with me and never hesitate to let us know how we can help.

HOLIDAY 2016 25

H o l i d ay Ta l k

Tips for Increasing Communication
During the Holidays

By Stephanie Ekis, MS CCC-SLP, Manager of Training and Implementation, Tobii Dynavox

References: The holidays are quickly approaching, time to get your Rett Girl ready for fun!
Whether she’s using a low-tech communication board or a high-tech device, the
1. Learning to Read and Write: following tips and tricks are opportunities to participate and create a positive
Developmentally Appropriate communication environment.
Practices for Young Children.
National Association for the 1. Create a holiday photo album.
Education of Young Children. In
Young Children, July 1998, 53 Everyone loves to look at pics! This is also a great
(4): 30–46. way to support social interaction. Import digital
pics into her device or create a communication
2. The Magic of Words: Learning in book from past holidays to allow your child to share
the Early Childhood Classroom. stories and family traditions with others.
American Educator. Vo. 38,
No. 2. Summer 2014. 2. Send a holiday card.
Using the built-in keyboard or a low-tech alphabet board, help your child
write special messages for holiday cards. It might be just one word or a
complex message. Either way, it will be super special for those who receive it!

3. Cook something delicious.
Cooking with family offers many opportunities for
communication and literacy. Pick out your favorite
recipes and use the built-in keyboard with word
prediction or a low-tech alphabet board to create
the shopping list. If they are emerging writers,
model how to create the words using their system.

4. Create a holiday calendar of events.
The holiday season is a busy time for everyone. Use the built-in calendar on
your child’s device (or create a paper one), so they can independently keep
track of parties and special events. This also offers opportunities for them to
talk about upcoming events with their friends.

5. Teach new vocabulary. holiday vocabulary

Did you know that children need repeated exposure
to gain vocabulary? Spend some time exploring the
already available on your child’s device or
communication book. Think of different
ways to use the vocabulary and model often.

26 HOLIDAY 2016

Rett
GIRL

HOLIDAY

a h and Wellness

THE BODY HEALS WITH PLAY, THE MIND HEALS WITH
LAUGHTER AND THE SPIRIT HEALS WITH JOY

HOLIDAY 2016 27

L e t ’ s Ta l k A b o u t T e e t h

Protecting Her Smile

Your dental questions answered
By Dr. Melissa Rozas, D.D.S, Pediatric Dentist

We sat down for an interview for cavities, however, it is bacteria in their mouth that can need to brush more often, even
with Dr. Melissa Rozas to ask her possible, so brushing is still if they are tube fed. Brush the
a few questions about Rett recommended. In addition to quickly cause cavities and gums and, if you can, brush the
Syndrome and dental health. keeping the teeth healthy, tongue as well. We do not
Below you will read common brushing is also very important tooth decay. Choosing foods recommend fluoride toothpaste
questions we as parents have for stimulating the gums which for kids under 3 because they
about our girls and their teeth. can be much denser, thicker that are low in added sugars is are not spitting. If they are
and more prone to gingivitis ingesting fluoride when they
What is the single most than children who eat by best. You also want to make are very young (under 3) then
import thing parents of Rett mouth. Chewing is good that fluoride gets incorporated
Girls can do to improve their stimulation for gums and teeth. sure you stay away from foods into the adult teeth and can
daughter’s dental health? If kids aren’t getting that cause discoloration. After age
stimulation we must be the and drinks that are high in acid 3 those adult teeth are done
It’s important to establish a ones giving it to them by forming, and therefore aren’t
pediatric dentist early on so they making sure we are brushing at content. Foods high in affected by that fluoride so
can evaluate and teach the least twice a day. switching to fluoride toothpaste
parents how to take care of the carbohydrates can be broken is recommended. If a child is
teeth, show them what is normal How important is nutrition strictly tube fed you can stay
and what is not and help to for dental health? down into sugars as well so away from fluoride and just
decrease the chances of dental Specifically what should brush with warm water or
concerns. Pediatric dentists have parents include or avoid in goldfish crackers and things non-fluoride toothpaste.
two additional years of residency their child’s diet?
that they complete after dental like that can cause tooth decay. Sometimes we recommend a
school. During this residency Calcium is very important to rinse that is antibacterial
they learn specialized skills growing teeth and vitamin D is Water does not harm the teeth (Chlorohexidine) because it’s
related to young patients such as needed for calcium to be very good for the gums and
child development, child absorbed. Unfortunately some and aids in washing away any they are at low cavity risk. It’s a
psychology, pharmacology and of the best ways to include rinse but we know a lot of girls
they gain experience working these are by eating dairy food particles and sugar that can’t swish it around in their
with children with special needs. products which can sometimes mouths and spit it out so we
Especially because of the timing cause constipation and other GI may be clinging to teeth so just dip the toothbrush in the
that Rett Girls get diagnosed concerns, particularly for kids rinse and brush with that. Each
(between ages 1-3) medical with Rett Syndrome. drinking lots of water is child needs to be seen by their
concerns may get so Alternative sources of calcium dentist to know what they are
overwhelming that dental health are nuts, soy and green recommended. Additionally be eating, how they are eating,
falls by the wayside. vegetables. Kids who spend what meds they are on and
time outdoors get their Vitamin mindful of oral, liquid what age they are to know what
What are the dental D from the sun. type of tooth paste or rinse is
concerns for a child who is medications, which can be high best for them, it’s
tube fed? Adult teeth are more individualized. Flossing is
nutritionally affected than baby in sucrose (sugar). Of course something that parents shy
Tube fed children are actually teeth because baby teeth are away from but it’s very
much less likely to develop already formed by the time kids meds are essential for some important for keeping the
cavities. Because they don’t are born. But these teeth can plaque low. We recommend
have sugary foods in their decay, so if they are eating a lot children and the sucrose helps floss holders or the long string,
mouths there’s not much risk of sugar that’s going to feed the whatever works best for the
to make it taste good, but make

sure to flush with a drink of

water and brush often.

What methods of teeth
brushing and toothpaste
are recommended and
why? Any risks with
swallowing too much
fluoride? What other
alternative toothpastes
would you recommend?

You want to make sure you find
a soft toothbrush. I don’t ever
use a medium or a hard bristle.
Also be sure the brush is an
appropriate size for their
mouth. As a child progresses
and tolerates more, try to move
to an electric toothbrush. A
minimum of brushing twice a
day is good but some kids may

28 HOLIDAY 2016

parents. “come on in.” When we see some

red or inflamed gums we tell Dr. Rozas is board certified by the American
Board of Pediatric Dentistry. Over the last 15
Many Rett Girls’ teeth grind, parents not to shy away from that years, she has been recognized as a leader in the
what are some ways in which area but to brush it a bit more and local dental community, as well as state and
families can curb this if at all maybe wash with some warm national organizations. Dr. Rozas graduated
possible? from Texas A&M University with a Bachelor of
water because that will help the Science Degree in Biomedical Science in 1991,
and in 1995 she received her Doctor of Dental
area to heal quicker than if you Surgery Degree from the University of Texas
Health Science Center in Houston, Texas.
Bruxism (teeth grinding) is the left it alone. Also, sometimes Following dental school, she completed a
two-year residency at the University of Texas at
chief complaint of all children parents report an increase in Houston and Hermann Hospital where she
received her specialty certificate in pediatric
under 4, but with Rett Syndrome seizures when permanent molars dentistry in 1997. Shortly after graduation, she
moved to Dallas and started her own practice in
and other syndromes that have come in, so I tell parents to 1998. Dr. Rozas is passionate about educating
families and her patients on dental health and
muscular issues we tend to see wiggle that tooth as much as you she is committed to giving each child excellent
care. She resides in Coppell, TX with her
teeth grinding continue and can and then stimulate those husband, Tim and their two children, Bryce and
Lauren.
really cause a lot of aggravation gums so we can get the tooth out
s3TSu-hrbefearairSscctehulserfrpoooarfudnittdhdeoeBnstreiRgeutnsehethditnhGatloesisrcsall.eotaurinnmgiqeau!le
for the parents. There’s a lot of quickly. Tylenol and Motrin can
HOLIDAY 2016 29
wear on the front baby teeth, but be used for pain, especially at

we typically don’t see a lot of night to help them sleep.

wear on the back teeth.

Children’s mouths are always Are there any other
changing and it’s difficult to get complications specific to Rett
an impression on kids so we don’t Syndrome that our families
typically do mouth guards. We should be aware of?

don’t have a good cure for this,

sometimes there are chewy toys Children with Rett tend to have

but that may not always work for Micronesia (smaller jaw) and

girls with Rett. Bruxism can cause higher arched palate. These kids

baby teeth to be so worn down tend to breath through their

that there isn’t much tooth to mouths more. The musculature

grab onto and wiggle. A dentist around their mouth and jaw is not

may need to help them get those as strong because they are not

teeth out but this can happen eating and talking so their

across the population, it’s not mouths just sometimes stays

specific to Rett Syndrome or kids open. This causes a little bit more

with special needs. air to hit their mouths and teeth

so the lips may dry up quicker.

Incoming molars and We tell parents aquaphor is the

teething seem to be very best for keeping that area

painful for our girls, possibly moisturized. The gums can be a
due to the fact that many
bit more puffy and inflamed and

have developed thick gums they may have a bit more tartar

as a result of anti-seizure build up because they may not be

meds. Any recommendations swallowing their spit all the time.
for helping them through this Some kids don’t have this
pain?
problem but a lot of them do. So

it’s something that we look at and

Brushing is the best way to help watch for, and make parents

stimulate the gums, so when you aware of.

see a tooth coming in brush that

area. This will stimulate the cells

in the gums and send a signal etIloefchSyteroiprSucirntetoaoRBorgetrctehtuthsbGefhxorirrcuislistiiteshadotrnghaerebaRedopaeuyetttrtwfsboGoarrniyuarasllnfih.zooiernrdgg!
the brain that says to the tooth

Rett
GIRL

HOLIDAY
Hope

HOPE FOR THE HOLIDAYS

30 HOLIDAY 2016

I want to share tmheoriengforerdailel notfsooufragibrelsafiutgihfutilnsgtoRreytt– Soynnedtrhoamt ereaingndittheesir
our hope to do
families.

fGCthohtohhiorerarwwllHoplPileumneokrgn.we$"ahgene1epmry:m2row1eir5Clasel0euiyoaasrcnwer$hc.aja1hTurrhesmmitatniitoceel’ovlsssiismorcn,inoggpmmhdlfoetaoptr,sleee$ltadt.1eirWndtsmhgueceicotlnolasuiatiolrximdano-iwnersdedeeaoaenlotlllhkduayerrRosicmemf. avIcpo’mlvooaseuptncrattfsMhuioegoniunlmudlrig"socoDhoinrntremeDa6famboumwolnulueadnBrtesiitkgytso
ecoIcavnowtptmobehuoptemIroolhaohydwduuremtrekotsowhtbleuauuopiaetennnnluisogdngdirirtteaitgsyynbwbhaRoneteettleeloeofiarylnashtyfucmtgmadaiuthnc,midoenafoIgpeudniitwmulfoitlgeifolewgmwerlgInsisieneirtuttdtaolhagtnhsfenlneot,idardRotdiacelyreyullgdfi;wllvotsiitrthvirleuhashfoleedtksaewnwsetplywo.eeeetlaIuacevhxtchra’ceciesohsaenhercuadsj?cffauudvlonldtaosoeliueetrv,prtltenpeeadhsedglasaerltmeercfottteohdohegacopeaneotptfpoynltduiywhotrgscfwerohotrhmtrroorourugaiawrnangwakspniigntiemraanylioeezrtacurltteeeorgonwmerdnmaeehintatcgrsmelhsinateozlhmdupsaaaaisnlnn.ptpwliIoiddyoantphfyinitaragam$rolatlynl5ljinpoiwekw0nwdaetce,egc0tiofGt.tdotw0hf.IoPuo0Iwwaat2.gtntawoeChhotyanitaatgscwdwson,hheiidai-dntrtop’ehoctsttohdhhhlaweiaeewsklerelasherewanadtlghleat

fYHlomIio'sormuytpaedhnelnlaaoftavuohsbegretohrttaehuotneffetdgrotfiehSrgutreatrrsutehaohraoheitlnp.hltyeGehe,soaswrteeitnheaiqgnrlhoulcyaauelgvugdsaedtheiien.teoosspnttisbmra.euTlpalthtaotemchdyteedopnnsuategsrrvaugaeleinlrresydlslswmpwtooahytdkaeliaatnny?sgttHiwah1uilo5tmchuuyarer.enedTaeusrosluculapibrntpagigotoitarnrlltnisn,tyhcsgooeoRnmydeenpetwteaspeSshsydeoinrotwadontoretaouhlnmylrddinevleeowe.videth.
ttIwoahmIoItkgnfiher’Iraoannsea’cugmmgrghoihtjamsihusaowonnep”tesvburehiidtrerznwlrpo,aelia$gdwtifenuudtko3oriwkldteeolehb0nfdietnuwnayo9oooolgtun,rilue2’ilitsssreslkuvto6,hvReeaasofl1aReoallerfdGrwlyremofteoowrotPvbkaouiww2nlcyelooimrioeCnsneetcnrmh.staewt1dceoOf,hnmalr,ohsriu5eeucmetrdouc8ihaardrsohnb3m?ffmgueiteiuitNpdoysaardtyplpeoodontfisotosrontedhgbyihnuronaahaeotirtrnssnitttosdnwmop,dghegetamideaxoarwicnoseyrwikreisdseeseetmiuotinwhsvsaofsmootouierbhnnonwereprryogebn6ptieorthbegeb’fvotuhsoeehfaleertiurtcvateracpoheeheytavuhlfierloaleanteoaslirrnicrgldeffoiiwleetnusaetftit!htlhehcinouo.r6noheseegsukvmoenicbroetonuhghesgdeolvattorecipdrhoreosalwslfv,ufideusfe.beag.gsWl1atsrythehoan5eaittvtdnw0DinhhenaRhdafanirrgastnyeeEa.amcAantacseihlMictonfflwlaroeindooeleBwpalnrsceItlrts,Ggoeneceteaudagohwvrrcesae“a“ithm.rttrdghhiIhyo’teoaamoiuuslneamslitssnenta.!hogdnIWarlyaeaenem”lkdlfasuoyl.
Ingrid Harding
Founder &
Girl Power President
2 Cure, Inc.

HOLIDAY 2016 31

No more ceilings

By Duncan Millar, CO-FOUNDER ARMY OF US

It’s been 5 years since I was
introduced to Rett syndrome.

My first mistake was to Google it,
my second mistake was to believe
what I read. As soon as I did, I
started building ceilings.

ARMY OF US must affect intelligence. But, now I read that my goddaughter Carys
we know that the intelligence of would never walk, or talk, that she
WE FIGHT RETT SYNDROME people living with Rett syndrome would have breathing problems,
has been severely underestimated. seizures, weight gain problems,
“My first mistake scoliosis, osteoporosis and most
was to Google it, It’s not only that we have importantly I read that Carys would
my second completely misjudged their never exceed the intelligence of
mistake was to intelligence, but also how we have 7-year-old girl.
believe what I been taught to make a negative the
read.” starting point of every Those things became the
conversation we have about Rett foundation of the ceiling I was
There are many things about Rett syndrome. building. It was incredibly low and
syndrome we all wish we could it blocked out the stars.
change, but there are also some Instead, like we do with other
things we already can. children, we should choose to I then discovered Rett had been
believe in their potential with no reversed in a lab, a cure had been
Somewhere along the line, limits. The sky's the limit; they can found. All we had to do was raise as
somebody thought that because reach for the stars. much money as we could. I’ve run
Rett syndrome affects the brain, it countless races now, participated
in more Tough Mudders than I have
fingers. I’ve climbed the highest
peaks in Britain and I’ve completed
an Ironman. I was part of a group
that formed a charity to try and
help raise money for this cure.

My world exploded. Suddenly Rett
syndrome was more than just
Carys, it was filled with loads of
new people: parents, families,
friends and most importantly, other
people living with Rett.

32 HOLIDAY 2016

“This is why When I found out that some of these people were communicating, reading
I fight Rett and even controlling their lives, it was a dawning moment for me; the light
syndrome, switched on.
because I believe
that goal is While the future of Rett syndrome is very, very important, people living with Rett
attainable.” syndrome right now are more important.

HOLIDAY There are things we are fighting to change, but there are also things we can
TIP change right now.

Much of the stress during the These people are
holidays comes from finding the smart, they’re chock a
time to run errands and getting block full of amazing,
your home ready for family and unbridled, exciting,
friends. raw potential. They
Consider hiring a babysitter to are funny, they are
care for your Rett Girl. Today, stubborn, they are
there are many websites that offer more tenacious than
listings for caregivers who have any Olympic athlete.
experience with special needs Our role is to help
children. Below is a list of a few: them break through
USA those ceilings and see
•www.care.com the stars. To be the stars.
•www.archrespite.org
UK This is why I fight Rett syndrome,
•www.skybadger.co.uk
•www.childcare.co.uk because I believe that goal is

Also Check your local church attainable. I choose to surround
and school for potential help.
myself with people who break

ceilings and reach for the stars. I

“Carys and Melody arebelieve in the people who are

fighting to give the girls the unique and most im-
tools to empower them and portantly, I bet neither
equip them so that someday,

they will be the people one of them have built
leading the army.

I’m now lucky enough to be a ceiling for me.”

the Godfather of two people, and share in the lives of countless other girls

(and a few boys) living with Rett syndrome. Whilst they live with it, it doesn’t

define them. Carys and Melody are unique and most importantly, I bet neither

of them have built a ceiling for me.

HOLIDAY 2016 33

Together for a cure

Disney princess

Join 75 rett families in florida february 24-26, 2017
at our 6th annual princess race and rettaway

DETAILS: You don't have to be running to enjoy this amazing "Rettaway" weekend! We
need cheerleaders out on the course and volunteers at our booth, too! PLUS,
FEBRUARY 24-26, 2017 we have other great things going on designed especially for Rett families: a
workshop with Susan Norwell, a fun Saturday night dinner, and more! This is
DISNEY WORLD - ORLANDO, FL our biggest fundraiser for research. Help us make it the best ever!

WYNDHAM LAKE BUENA VISTA TELL ME MORE ABOUT THE WEEKEND!
RESORT
This is our 6th year participating in this Disney event. We'd love for you to join us
WWW.GP2C.ORG/RETTAWAY for this amazing weekend filled with opportunity to learn and connect with other
Rett families. From volunteering side by side at our booth to just lounging by the
SCHEDULE OF pool, there is something for everyone! We have discounts for hotel and park tickets
EVENTS: to share with you, too. Visit www.gp2c.org/rettaway for more information.

2/23- 2/25 - EXPO BOOTH

2/23 - 1-ON-1 SESSIONS WITH
SUSAN NORWELL

2/24 - RETT U LIVE! MORNING OR
AFTERNOON WORKSHOP
WITH SUSAN NORWELL

2/24 - 5K RUN
2/25 - 10K RUN AND TEAM DINNER
2/26 - HALF MARATHON

34 HOLIDAY 2016

HOLIDAY 2016 35

GP2C POWER TEAM

We would like to introduce you to an amazing group of people who are Vanessa Covington - Glenwood, IA
working tirelessly to support the work of Girl Power 2 Cure! Our Power
Team is made up of 10 passionate and motivated individuals who have I am married to Phil and we have two
each been inspired by a Rett angel. The team mission is to take action boys (19, 16) and Martilee (14) who
to drive impact throughout the Rett community, focusing on family has Rett Syndrome. We have lived in
support, outreach, awareness, education, and research. Read on to many places, but currently reside in
learn a little more about what drives each member of our Power Team. the small town of Glenwood, IA. I am
a stay-at-home mom who enjoys
Mimi Burke - Crown Point, IN being creative, going "junking", and running #untilshecan.

While having two girls with Rett Maria Hernandez - DALLAS, TX
Syndrome is rare, I am blessed to say
that's exactly what I have. Sophia is Danai Gutiérrez is my
14. She has taught me so much more goddaughter/niece. We are from
than I could ever teach her. She is Texas and she is 8 years old. I love
brave and strong. She is graceful, raising awareness every chance I get
determined, and so incredibly smart. I also have a beautiful for her and for all of our girls. Danai's
bonus-daughter, Emma who is 17. Emma is Mike's oldest daughter, favorite therapy is horse therapy at
from his first marriage, so now is mine, too. Emma is sweet and Unbridled. I dream of the day we have a cure for our girls.
sassy. She's silly and mischievous. She's smart. She loves food, her
siblings, and adventures. Brittany Goodman - Nolensville, TN
Rett Syndrome steals our girls' ability to talk, not their ability to
understand. They deserve to live the life they have always wanted, My husband Ben and I live with our
and I'm thankful GP2C is working so hard to help them have that. two beautiful girls, Blakely Layne (5)
Working with Girl Power 2 Cure has given me a wonderful platform and Andi McCarley ("AndiMac," 3).
to help them, and so many other families living with Rett After Blakely's diagnosis at age 3.5,
Syndrome. They are a source of friendship, support, and we started a Facebook page and
knowledge. I'm excited for the research. I'm excited for treatments, website called, "Join Team Blake" to
and I know that together, we are making a difference in the lives of help raise money and awareness for Rett Syndrome. I have a
thousands of girls around the world. degree in Communication and Marketing, which has been
immensely helpful in helping spread the work about Rett
Dr. Tina Walton - Tucson, AZ Syndrome and the hope for the CURE. We are fully devoted to
educating our community of support, AKA "Team Blake", about Rett
I teach music at Catalina Foothills Syndrome, as we share Blake's challenges and struggles, but also
High School in Tucson, Arizona. My each and every precious victory she has along the way. Our
daughter, Laura Rayne age 11, my message is one of HOPE. Blake and all girls with Rett Syndrome are
husband, Dave, and our cat, Kitty B, smart, and they need our help to find their voice! #untilshecan
complete the Walton family.

36 HOLIDAY 2016

Karla Perez - Donna,TX Ronda Trester - Little Elm, TX

I am bilingual English and Spanish. At the time of Courtney's diagnosis
I'm currently a stay-at-home mom of we were simply heart broken,
three: Diego (10), Luz Viviana (8 RS) scared, helpless, and lost beyond
and Samantha (3). Being a stay what words can describe. Every
at-home-mom for the past three doctor we went to never heard of
years has allowed me to get more Rett Syndrome and the specialists
involved in raising awareness and funds for Rett Syndrome that were familiar with Rett Syndrome wanted to prepare us for the
research. I enjoy helping newly diagnosed families in the USA as worst. Our daughter’s future flashed before our eyes. When it's
well as Mexico. I am honored to be part of the Power Team and look your daughter, when it's your child, you will move Heaven and
forward to working with many families. Earth to search for answers and to fix what is broken.
Today, we are making great strides spreading Rett Syndrome
Candice Samples-Morris - Jacksonville, FL Awareness. People are listening, they are taking action and we are
coming together to make a difference. I will continue to hang on to
I am a resident of Northeast Florida hope that in Courtney's lifetime there will be a cure or treatments
along with my husband Frank, for her to have a normal life.
daughter Evie, and parents Roy and I am honored to be part of such an inspirational group. I am looking
Joyce. Evie was born in October, but forward to meeting and helping other families through this Rett
it would be five months before journey. To empower the hope, embrace the possibilities and turn
symptoms of a medical concern our dreams into realities. Together if we believe, we can achieve!
would become troublesome. Despite multiple tests and numerous Ronda has been employed for over 10 years at a financial
doctors, she did not receive a diagnosis of Rett Syndrome until institution. She lives with her husband, Wally; and their two
February 1, 2013. Evie was diagnosed with atypical Rett Syndrome. children Deven (18) and Courtney (11 RS).
Since Evie’s diagnosis, we have become active in raising awareness
of Rett Syndrome on the First Coast. I also run for Team GP2C, Morgan Moses – Harrisonville, MO
helping to raise awareness and find a CURE. This year, my mother
and I started a Power the Flower 5K in Jacksonville, FL and are My niece has Rett Syndrome. She is
looking forward to future runs in NE Florida. only 4 years old and she has made
such a positive impact in my life. I
Niki Tebbe - Breese, IL have a tremendous passion for
raising awareness and funds to find
I have three children, Quinn (RS) 13, a cure for Rett Syndrome. I am either
Ryker 13, and Spencer along with baking dog treats for my business, Harley's Bakery, or fundraising
husband Cliff live in Breese, Illinois. I for Girl Power 2 Cure, and sometimes both!
enjoy running, biking, watching kids in My niece has Rett Syndrome. She is only 4 years old and she has
sporting events and most of all family made such a positive impact in my life. I have a tremendous
time. I have been an Emergency passion for raising awareness and funds to find a cure for Rett
Department nurse for 24 years and Syndrome. I am either baking dog treats for my business, Harley's
loves caring for people. We have a Bakery, or fundraising for Girl Power 2 Cure, and sometimes both!
crazy, busy life but would not have it any other way.

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